Looking for the Map: Part 2 of My Health Journey

So, between November 2009 and June of 2012, I lived with bouts of recurring pericarditis still without knowing the cause.  With everything I did, I worried that I would have another flare.  A flare basically meant lots of chest pain, bed rest (because it seemed to decrease the amount of time a flare lasted), and another subsequent increase in my dose of steroids.  I limited my physical activity during this time, which meant that I wasn’t spending much time outdoors.  And time outside in nature is what soothes me and my soul the most.  As you can imagine, I wasn’t feeling very good overall during this time.  I noticed apparent patterns like my symptoms seemed to get worse around the time of my period, and I seemed to always have flares of chest pain on my birthday, Thanksgiving, and Christmas.  To the point that a friend once suggested that maybe I go to bed before Thanksgiving and not wake up until after Christmas.  I would tell my doctors, but they were unable to make a connection with any of it.

During my son’s naps, I would take time to research pericarditis.  I found an online support forum for people with pericarditis where I was able to connect to others who were also dealing with this strange illness.  I was anxious to find some answers, or at least other people who could relate to what I was going through.  I even went on to be the “leader” of the pericarditis forum for a while, welcoming new people into the group and sharing my own story.  I continue to keep in touch with a few of the women from that group.  At one point, I sought the help of an acupuncturist who would do weekly treatments and send me home with herbal Chinese teas to drink.

During the Fall of 2011, I came across a doctor in my area who had successfully treated someone with pericarditis using IV hydrogen peroxide therapy.  By that time, I was almost to the 2 year mark since my pericardial window, and had been seeing my cardiologist, a rheumatologist, and a had gotten a second opinion from a cardiologist at Stanford.  I was still on daily prednisone, still suffering with the side effects of it, and desperately trying to get off of it because of the known long-term negative side effects. I was also injecting myself with Methotrexate daily in hopes that it would help me get off the prednisone.   No one had any answers for me.  I was desperate for answers and was willing to try anything to get my health back.  I began my IV hydrogen peroxide treatments in September of 2011. I forget how many times a week I would go at the beginning, but I do know that there were some weeks in there once I was successfully off the prednisone that I went 3 times a week when I was sick and at risk of flaring.  Mind you, the office where I went was a 45 minute drive away from my home, and I would generally be there for 2 hours for each treatment, which meant that the whole ordeal of driving and sitting there getting treatment took about 4 hours total.  And I was fitting these sessions in around being a Mom and full-time nursing student.  I once saw a movie where one of the characters was going for chemotherapy and would pull up a black, leather recliner in a room next to the other people there receiving their chemo.  That’s exactly what it was like with the hydrogen peroxide treatments.  A group of people all sitting around in recliners hooked up to IV drips.  The idea behind why hydrogen peroxide can be beneficial is that it adds a large amount of oxygen to the blood stream, and things like bacteria, viruses, and fungi generally do poorly in high oxygen environments.  So even though this doctor couldn’t be sure what was causing my pericarditis, the idea was to oxygenate my system so that the possible culprit would be killed off.  Well, this worked great in that I was able to get off of the prednisone fairly quickly.  Initially, I would chat with the other people there amazed to hear their success stories with a myriad of different IV treatments for various illnesses.  IV hydrogen peroxide does wonders for people with circulation issues related to diabetes for example.  I’d share my story and my seeming success with this new treatment. Later, I would sit and study for class, or sleep during my treatments.  Over time, it became tiring to talk and share my story.  I found myself becoming more and more exhausted all the time, and I would usually sleep through my treatments.  I also noticed that my memory surrounding my exams in nursing school seemed to be declining.  At some point, in a conversation with another patient about primary care doctors, I was told to go to a Nurse Practitioner here in town. My doctors attempted to explain away my severe fatigue (and think even more tired than new parents) by saying that it was because I had a young toddler and was in nursing school, but I knew that it was somehow related to my health. I even questioned if maybe I was experiencing adrenal fatigue, but it fell on deaf ears.  At this time, feeling generally unheard by my other local providers, I sought out the help of the holistic chiropractor in Oregon who had helped me when I bruised the bones in my feet in a fall (see We Are Never Alone) citing extreme fatigue as my most problematic symptom.  She listened to me and agreed that I could be experiencing adrenal fatigue and she had me do a saliva test to find out.  Sure enough, the tests came back definitive for adrenal fatigue and she started me on a natural supplement right away.  I noticed some improvement, but I generally noticed that I seemed to be feeling worse all the time. Between September 2011 and June of 2012, I had a total of 55 IV hydrogen peroxide treatments, multiple infrared sauna treatments, and IV vitamin C and IV DMSO treatments.

When I finally made an appointment (June 2012) with the Nurse Practitioner I had received a rave review about, I really felt like I was just going so that she could meet me and hear my health story, with the hope that she could be a sort of overseer for me of all things medical.  I had a lot of specialists involved on my case, but did not yet have a primary care provider that I could trust to keep track of everything as it was happening. During my first appointment in June 2012, upon telling her my experience with pericarditis and the ensuing loss of my health, she began asking me questions.  I should say that there had been a time for me while living in Oregon where I got lucky to have health insurance through a job after at least 5 years without it.  I had a kind of running list of all of the questions I wanted to ask a doctor during that time about small things related to my health that I had noticed.  My ex-husband once reminded me that I would sometimes see natural remedies for things at the food co-op in Oregon and wonder if they would help me.  He just thought that I was a hypochondriac.  My point is that some minute symptoms may have appeared prior to November 2009.  But back to my appointment…after maybe 5 to 10 minutes of asking me questions and examining me, the Nurse Practitioner told me that I should be tested for Lyme Disease.  I explained to her that I had been tested for Lyme Disease during my second hospitalization in February of 2010, and had been told that the test was negative.  She explained to me that the tests for Lyme weren’t very sensitive and that because of that, diagnosing Lyme was supposed to be based more on clinical findings than the tests.  SEE LYME DISEASE SYMPTOM CHECKLIST HERE  She also explained that because ticks carry more than just Lyme Disease that it was very possible that I was also experiencing symptoms related to other co-infections I likely had.  She gave me a test kit for the Igenex Lab Inc. (IGENEX WEBSITE) here in California that has developed one of the most sensitive tests for Lyme disease in the world, and suggested that I make an appointment with a Lyme Specialist in the Bay area.  I left that appointment completely stunned.  Could she have figured it all out so quickly? Could my almost 3 years of health problems be explained by Lyme Disease and other tick-borne illnesses?  Did this Nurse Practitioner just solve the mystery that several specialists could not?

I went home and dug out my lab results from February 2011 that I had because I had a copy of my chart made when I went to Stanford for the second opinion.  I found out that on my old Lyme test, I did have one band present, band 41. (Understanding Bands on a Western Blot Test) I began to fervently research Lyme Disease.  I found the Lyme Disease symptom checklist and was amazed with the number of symptoms I could check off on the list!  I began to get excited that I might actually have some answers!  And I had a lot of hope that this meant that I would finally get proper treatment!

If you recall from other posts, for my first career, I had spent the better part of 10 years traveling the country as a wildlife and fisheries field biologist, so I definitely had plenty of exposure to ticks in the wild areas where I lived and worked.  I have lived in 1. West Virginia 2. Florida 3. South Carolina 4. North Carolina 5. Maryland 6. Alaska 7. Utah 8. Oregon 9. New Mexico 10. California.  I also worked and/or spent time in 1. Ohio 2. Pennsylvania 3. Georgia 4. Arizona 5. Washington.  I never had a bull’s-eye rash often associated with Lyme Disease. And I only recall having one tick for sure while working in Washington. But the nymph form of ticks can be very very small, like the size of the period at the end of this sentence, so they are easily missed.

You may be wondering why I needed to see a Lyme Specialist rather than just being treated by my Nurse Practitioner.  Well, there is a lot of controversy surrounding the diagnosis and treatment of Lyme Disease.  There are two trains of thought about appropriate treatment for Lyme.  One group includes the Center for Disease Control (CDC), Infectious Diseases Society of America (IDSA), insurance companies, and most doctors who believe that Lyme can be easily treated with a short course of antibiotics. They explain away persistent symptoms post-treatment by saying that the problem is then either psychosomatic (all in the person’s mind) or an autoimmune response.  The other side includes the International Lyme and Associated Diseases Society (ILADS), Lyme literate doctors who have a specialization in Lyme Disease, and lymedisease.org that believe that Lyme Disease is resistant to treatment and that longer courses of antibiotic therapy is needed to successfully treat Lyme.  They explain that there is a such thing as chronic Lyme Disease that persists after treatment, especially when Lyme goes undiagnosed and therefore untreated in individuals.  Most doctors aren’t really trained to recognize Lyme, let alone treat it.  Lyme has so many different disguises and an extremely wide-range of symptoms.  In the United States, the health insurance companies have a lot of say on the kind of treatment doctors can provide to their patients with Lyme Disease.  Doctors who have given their patients long-term antibiotics for Lyme have had their licenses threatened and in some cases taken away. So the Lyme literate doctors as a rule don’t accept insurance, and instead require patients to pay out-of-pocket for their services, because they have found the most success in treating people with long-term antibiotics, and insurance companies would limit them.  If you want to learn more about this controversy, I HIGHLY recommend that you watch the documentary “Under Our Skin”.  It used to be available on Hulu or Netflix, but I found it for rent on YouTube for $3.99 here: WATCH Under Our Skin

In a very round about way, I ended up having my first appointment with my first Lyme Disease Specialist in Los Angeles in July 2012 before flying to Colorado to visit family.  Prior to my visit, I was asked to provide my medical records and was asked to fill out extensive paperwork detailing my symptoms, and was also required to write a one-page paper outlining my health concerns.  As soon as the specialist entered the room, she told me that she definitely thought that I did indeed have Lyme Disease as well as at least Bartonella (Cat Scratch Fever), because of the involvement of my heart.  She surprised me by saying that it would be better if I had AIDS, because it was easier to treat than what I likely had.  At that time she began to mentally prepare me to get either a PICC line or Mediport for IV medication delivery in the future, because of my heart and brain involvement.  She thought that the IV hydrogen peroxide treatments likely helped reduce some of my bacterial load, and said that I was likely beginning to feel worse, because when Lyme is killed off, it emits neurotoxins into the body which can start accumulating in the brain if you’re not taking any kind of supplement to bind to the toxins as they are released.  She believed that this is why I felt so exhausted all of the time and why I was having issues with my memory. She filled out the paperwork for the Igenex Lab Inc. test kit and decided to test me for a whole host of infections at this time. Igenex does not accept insurance, so you have to pay out-of-pocket for their testing unless you have Medicare, or your health insurance covers out of network labs, which mine did not at the time.  Luckily, I was able to apply for and receive assistance from the Lyme Test Access Program (Lyme-TAP) for my extensive testing.

At this first appointment, I received an IM injection of an antibiotic, a multitude of supplements, and the direction that I should completely eliminate gluten, sugar, and dairy from my diet.  I was educated on the Jarisch-Herxheimer reaction, and was told various things that I could do to reduce the symptoms and detox my body during treatment.  I was given a prescription for an antibiotic (Rifampin) to start once I was home from vacation.  We continued onto Colorado to visit with family, with a suitcase full of pills, liquids, and powders.  Finally, I had some answers, and I felt like I was making progress towards getting some semblance of my health back.

Matisyahu “Step Out Into the Light” Video

…to be continued…

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If you or someone you know has experienced Lyme Disease first-hand, and you have questions or comments to share, please do.  I always try my best to help other people who are also on a journey with Lyme Disease. I have included a lot of very helpful Lyme-related links throughout this post.  Please click on them if you want to learn more!

 

We Are Never Alone

I’ve had enough experiences in my life to show me that we are never alone.  I’m not just talking about our friends and family members who are there for us when we need them, but I am also talking about our spirit guides.  And it isn’t that I knew that or felt that my whole life as things were happening, but as I experience instances in my current life where I am obviously being guided and supported, I can look back to past events and see that I was also being guided and supported back then.  A few examples come to mind right away.

One of them is from the Fall of 2006 when I flew to North Carolina to visit some dear friends in my beloved college city of Asheville.  I flew into Charlotte and my friend Michele picked me up.  We then drove the 2 hours back to her house.  I was exhausted, so I ended up taking a nap in the spare bedroom where I was going to be staying.  Before I went to sleep, I only briefly saw the layout of their house as I was walking through it.  My friends had two young boys who were ages 4 and almost 2 at the time of my visit. At one point, I woke up needing to use the bathroom.  I sort of half asleep walked out looking for the door to the bathroom in the hallway.  I came upon a door that had a little hook latch lock up high locking it from the outside.  I unlatched it thinking that maybe they locked it to keep the kids from going in the bathroom unsupervised. (I did not have my son at this time, so I was pretty clueless about this type of thing).  I unlocked the door, opened it, and sleepily took a step.  As I watched my surroundings fly by me as I fell, I was very confused.  I hit the concrete floor with my bare feet before landing on my side.  As I laid on the floor, I laughed to myself, because I was like “Holy shit!  What just happened??” The door that I had blindly stepped through led to my friends’ basement.  I had fallen 8 feet to concrete. Before my visit, Mike had removed the basement stairs (he was going to replace them), and up until recently had been storing all of his saws and tools in the spot where I landed.  My feet hurt, but it wasn’t an excruciating pain.  But I was a little nervous that maybe I could be more hurt than I felt, so I was hesitant to get up.  I yelled for my friend, Michele.  I remember the look on her face as she peered down into the basement at me lying on the ground.  She called her husband, Mike, at the fire station where he was on duty, because it just felt like we needed advice.  I ended up sort of crawling out of the basement through a door to the outside and up the steps to their back deck.  It was my first day of 7 or 10 days that I was going to be there visiting.  I had health insurance at the time through my job in Oregon, but I really didn’t know how that transferred to getting care in North Carolina, so I didn’t go to the ER or even a doctor while I was there.  Michele felt awful, so she called a good friend of hers and got me in for a massage where the woman focused on my feet and wrapped them in warm compresses.  I felt like I had a guardian angel watching out for me that day. Actually, I remember feeling like my good friend, Matty, who had died in 2001 was watching out for me.  I went on to have an amazing vacation.  The tendons and muscles in my feet would be really cramped up when I woke up in the mornings and it would hurt to walk, but as I walked more, they would loosen up.  I didn’t let my fall hinder any of my activities that week.  I ran around the house with Mike and Michele’s boys, even pulling them around in a carry on suitcase at one point.  Michele and I went and saw a band one night where we proceeded to dance for HOURS non-stop!  I went to my alma mater, Warren Wilson College, and enjoyed a party with dinner and live music with more dancing to celebrate our 5 year college reunion. When I went back to Oregon, I was having pain in the heels of both of my feet, and because my job involved a lot of hiking, I sought the care of a holistic chiropractor. The bones in my heels were bruised, and luckily, she was able to use ultrasound therapy to decrease my healing time.  Later on, I went to a podiatrist who told me that had I broken any one of the tiny bones in my feet during my fall, I could have easily been crippled for life, unable to walk.  I was obviously meant to get through that time unscathed.  I finished up that field season with no problem.  I am seeing that this experience with this holistic chiropractor opened my eyes to a completely different type of health care than I had ever known before, which made me more open to alternative therapies when I needed them later on along my journey.

Of course, if you’ve read my post titled, “Lost: Part 1 of my Health Journey”, you know that in 2009, I landed in the hospital with some serious heart complications from a mysterious illness.  If you pick the story apart a bit more, you see that the timing of when I passed out at home was divine in nature, as if it had happened on any other day during the week, my now ex-husband would not have been home to witness me passing out, and would not have been there to call 911.  I was obviously meant to live through that day.  The Physician’s Assistant from that story was placed on my path then, and again later as I started seeing her for homeopathy.  And homeopathy changed my life!  The Universe we live in is really amazing and connects people up with us so well.  Have you noticed that in your own life?

In my healing journey, I have witnessed the right people showing up in my life at the right time with just the treatment that I needed in that moment.  And that continues to happen to this day.  I find that the more aligned with my soul and trusting of the Universe that I become, the more guided and supported I notice that I am.  How have you come to find your own healers?  Can you see that the ones that have helped you the most were divinely placed on your path?

Yesterday, as I was going about my day, a few things lined up in a really cool way.  I went to have labs drawn after not having them done for a very long time.  I got there and the phlebotomist who was working is one that I have known since my early days of losing my health.  One of my labs always throws them off, because it’s not a common one ordered for most people.  So she had to get on the phone with her supervisor about how to process it.  When she got off the phone, I said something about how much I love my primary, a Nurse Practitioner, because she figured out what many specialists could not. I asked her how she had been, and she started telling me that she had been having a lot of mysterious symptoms and that she was frustrated with her doctors and the current plan of care.  I urged her to make an appointment with my NP to at least get her opinion, because my NP is one that will do a lot of research to get to the bottom of her patients’ illnesses.  I think she thrives on uncovering mystery illnesses.  Well, this conversation made me late to meet up with a new friend.  I was feeling bad about it when I finally walked into the coffee shop to meet her, so I told her a little about my conversation and the fact that I felt like I was supposed to have connected the woman with my NP.  Then, this new friend goes on to tell me that someone in her family has been having a lot of health problems that no one can figure out, so again, I recommended my NP!  Now, had I not been getting labs prior to this meeting and not had the conversation that I had with the phlebotomist, I would have been on time for this meeting with a new friend, but a conversation about my NP likely would have never even come up.  At this point, I can’t know for sure that my conversations yesterday will help anyone, but with all that I have witnessed in my life, I trust that they will.  Do you notice synchronicities like this in your own life?  I could write a whole blog post on the magic of synchronicity!  Synchronicity is defined as the simultaneous occurrence of events that appear significantly related but have no discernible causal connection.

My last example is what prompted me to write this post.  This summer, as I was hiking solo off-trail heading back to camp, I veered off in a different direction than I had taken on my way up.  Before I had left the top of the rocky table I had hiked up to, I took in the peaks around and the lake below, so that I knew the general direction to head.  I expected the terrain to look familiar to me on the hike back down. But as I hiked down, I had a hard time finding the same ravine that I had climbed up during my ascent.  So, I just kept walking in the generally right direction.  I did start to get a bit worried at one point, and I asked my spirit guides out loud for guidance.  I acknowledged their presence and the fact that I knew that this wasn’t where my story ended, and I asked them to help get me back to camp.  I told them to get me to something familiar, so that I could get myself to the lake that was the start of the off-trail part of the hike.  Eventually, I made it to a lake, but it did not look familiar to me.  I took a picture of a cool tree in the water with my phone.  I scanned the edge of the lake for the rock formations that I knew the lake I needed to get to had.  I decided that I would skirt around the edge of the lake in the direction I thought I should be heading, but the granite rocks prevented me from staying right at water’s edge for long.  So I kept going, trusting that I would be led to where I needed to be.  It was a hot day with temperatures in the 80’s, and a lot of the hiking was exposed, so I was getting pretty heated up from the sun. After hiking for about 20 minutes, I ended up on the edge of a lake.  In fact, I checked the pictures on my phone, and found that I was indeed at the same spot I had been nearly 30 minutes prior. And I cannot tell you how I even did that!  Nothing until that moment looked the same to me as I hiked.  So it felt a bit “Blair Witch Project” to me, and it made me panic a little. But it also made me get more serious about finding my way out of there.  I knew the direction I had come from the first time I had landed at that spot, so I looked up and got a good sense of where the sun was and that I needed to keep it behind me as I hiked.  I also made note of the rock formation in the distance that gave me an idea of where I was in the scheme of things.  And I asked my guides for help.  I started hiking again.  And this time, I was headed in the right direction.  On my way in, I had noticed a line of rocks on the curve of the trail in one spot where had they not been there, hikers could get confused and veer off the trail.  I remember thinking, “that’s nice that someone did that”. So as I had asked, on my way out, my guides spit me out onto the trail in the only place that I had specifically noticed on my hike in.  And because I remembered that spot with the rocks so well, I knew the direction that I had been walking on it on my way in, and so I knew what direction I needed to go on my way out. And just like that, my guides helped me.  That experience reinforced the fact that we all have guides with us all of the time who are there to help us along our journeys.  But they can only offer their help when we ask for it.

Some people may think that these things are merely lucky coincidences or acts of a god. I personally do not believe in luck or coincidences.   I see that everything in my life has worked out exactly as it was supposed to, and that there have been reasons for absolutely everything I have done, said, written, and been through.  Really, I don’t think that it matters how you explain it, so long as you acknowledge the presence of a power greater than yourself, your own soul/higher power, and ask for help when you need it.  I believe that this is why prayer really does work.  Prayers and asking guides for help is really one in the same.  We all have our own beliefs for various reasons, and that’s OK. It only matters that we understand and connect with the fact that we are always being taken care of by the Universe/God/a higher power to learn and grow in the ways that our souls set out to in this life.

We should all examine our beliefs to see if they create peace or suffering in our lives.  In my life, when I identified with being a victim of life circumstance and felt surely that I was being punished or that I had bad luck, I suffered greatly.  Putting it simply, I got tired of suffering, so I started being open to other ways of viewing things.  I sought new beliefs that offered me more inner peace and happiness along my journey.  Inner peace and happiness are choices, they’re not something that will come when you get that other job, meet that perfect someone, or acquire your ideal amount of material objects.  Inner peace is learning to accept the present moment of your life completely while trusting that that moment is all part of a much bigger plan for your life than you can even imagine.  Life is much too short and beautiful to suffer through it. Nothing in life is happening TO us, it’s all happening FOR us!

Matisyahu “Bal Shem Tov” Live

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Lost: Part 1 of My Health Journey

I had my son when I was 29, almost 30.  I was not a nurse at that time.  I had been a wildlife and fisheries field biologist for most of 10 years, and had lived and worked in 10 different states.  I was working in Sequoia National Park doing a little bit of everything for various departments before my son was born.  When my son was six months old, I came down with something.  I got sick.  A cold or something, I wasn’t sure. I noticed that I was getting short of breath walking up the steep hill to our mailbox, and on an 8 mile hike in Sequoia National Park, I had to stop to take a break to breathe, which wasn’t normal for me.  The night after the 8 mile hike, I was having pain in my chest when I was swallowing my food, and ended up with a fever.  I felt so awful that I would have likely gone to the hospital that night was it not a 45 minute drive away and night-time which meant my baby was finally asleep.  I remember not wanting to wake him up. I was breastfeeding, and in the few weeks of feeling ill, he started wanting to eat as often as a newborn, and I was completely exhausted.  He was eating almost every hour.  I slept that night and woke up drenched in sweat and feeling better, my fever had broken.  But then, in the following days, I began to run a fever of 102, so I decided to go to the local clinic in town.  The Physician’s Assistant there asked if my heart rate was normally high. I remember telling her that the symptoms seemed to get worse when I hiked, and she asked what I was doing hiking when I was sick.  She thought I had pneumonia.  She gave me a z-pack and an order for a chest x-ray should I start to feel worse.  I took the antibiotic daily, but was not really feeling better, and was still running fevers, so I called the clinic to ask about coming in again.  They told me to finish the whole round of antibiotics and to wait and see how I felt then.

I never ended up calling the office back.  On November 27, 2009, Thanksgiving Day, I woke up exhausted.  I remember being awake for a little while and being hungry, but being so tired that once I had fed my son, I went back to bed with him for a nap.  My now ex-husband was home from work for the holiday.  At one point, I woke up feeling nauseous.  My son was sleeping in my bed, and I remember carefully placing the pillows so that he would not roll out of bed when I got up to go throw up.  And instead of going to the bathroom connected to the master bedroom because I didn’t want to wake him up, I headed out of the bedroom towards the second bathroom.  I remember my husband was sitting in the living room as I walked by.  I told him that I felt like I was going to throw up.  I started feeling dizzy and so I started grabbing out for the walls as I walked.  The next thing I knew, I woke up lying on my back on the living room floor.  My husband was yelling “Jammie! Jammie!” at the top of his lungs.  He was on the phone telling the 911 operator that I was awake.  Apparently, I had passed out.  My husband told me that my eyes rolled back and that I looked dead. He was about to start CPR when I woke up.  After an hour of waiting and lying on the floor, an ambulance came and they placed a neck brace on me and got me on a gurney and into the ambulance for a 45 minute ride to the hospital.  Once I was there, I learned that because of flu season, my husband was not allowed to come into the hospital with our son, so I sat in the ER room alone, waiting for answers.  A chest x-ray and lab work later, a doctor came in telling me that my heart appeared enlarged and that it was a condition that sometimes happened to women after having a child.  It later changed to me having fluid around my heart.  I relayed this info via phone to my husband outside the hospital. Mind you, neither one of us is from California and we had zero family members around. The people we did know locally we had just met about 1.5 years prior when we moved to California from Oregon.  I remember not really knowing what the information about my heart meant.  There was talk of removing the fluid.  I waited in the ER all day with no food or water until they got me a room on 3W, the step down ICU, because they wanted to make sure that I was monitored closely.

At this time, I did not yet have a primary doctor in the area.  After all, I was generally healthy and seldom even went to the doctor.  Somehow, they eventually allowed my husband and son in the hospital to be with me.  We were told that I was going to have the fluid around my heart removed with a procedure calling a pericardial window, and they would also get a biopsy of my pericardium.  They believed that I had pericarditis, inflammation of the lining of my heart.  That night, I passed out 3 more times.  I would get nauseous and then my vision would get blurry.  And I would get so scared, because I knew I was going to pass out.  I’d yell for my nurse and she’d come running in.  I’d wake up with 20 people in my hospital room, and once, I had an ambu bag on my face helping to oxygenate me.  The crash cart (the one used during code blues) lived at the foot of my bed.  Initially, I was still getting up to use the bathroom with assistance, but I would cough and cough.  I had a splitting headache from not eating anything all day, and I remember the beeps of alarms going off all night because my heart rate was high.  By the time they needed me to shower with the soap to prep me for surgery in the morning, I was too weak and told them I couldn’t get up anymore, so they gave me a bed bath.  I was having cardiac tamponade because of the fluid, my heart was not pumping like it should. My heart was starting to fail.  After breastfeeding my son exclusively for 7 months, my husband had to go to the store and buy formula and bottles and hope that he’d take it that night, which luckily he did.  My nurse called the surgeon repeatedly because I kept passing out. And I remember my nurse telling me that she felt bad for my husband because she said that when I passed out, I did it for a minute or more at a time, and that I looked dead. She said it was scary.  Luckily, rather than waiting for 6 am, the surgeon finally came in at 3 am to perform the pericardial window.

I woke up in immense pain after surgery, because they had not wanted to give me a lot of medications that would affect them determining what was going on with me.  They had removed 400 mL of fluid from around my heart, yet the surgeon was not convinced that this would cause me to have so many problems.  For those of you in healthcare, my sedrate and CRP values were through the roof.  I believe my CRP was in the 200’s.  CRP is a lab test to measure inflammation in the body.  To this day, when I run into my cardiologist in the hospital, he comments on how high my sedrate and CRP were. (And gives me a hug…I ended up with the sweetest cardiologist in town!)  And fellow health care professionals reading this, PLEASE be sure to medicate your patients BEFORE you remove their chest tubes!  The pain was excruciating when it was removed and I screamed loudly several times.  And I have learned that I have a pretty high tolerance for pain.  I swear I harbor some PTSD from having that gigantic hose removed from my chest.

I spent 6 days in the hospital.  I was told that they had not seen any signs of cancer, and that they thought I had idiopathic pericarditis which was a fancy way for the doctors to say that they had no idea what caused my pericarditis.  I went home on prednisone and colchicine to decrease the inflammation.  They said that I had a 10% chance of the pericarditis coming back.  At the time, that sounded great to me, after all, the cardiologist didn’t say I had a 90% chance!  So I went home and started to get back to life.  I even went cross-country skiing in the Giant Forest 4 weeks after my surgery. I was feeling great and was so glad to be alive.  I felt like I was given a new lease on life!

I had always considered becoming a nurse, but this time in the hospital gave me a big push in that direction.  My son was a huge motivating factor in me going back to school, because I wanted more stability and more time off to spend with him.  Even in the hospital as I was recovering from surgery, I remember asking some of my nurses about nursing school and their experience.  As soon as I got out of the hospital, I applied to the local community college, and began emailing the other people in the Park who I knew had started nursing school to ask their advice for getting into the two prerequisite courses I needed for the nursing program.  In the 6 weeks after being released from the hospital, we moved into town, and I started my Microbiology and Physiology classes.  I was healing OK and seeing my cardiologist regularly as he monitored my labs and my medications.  I sometimes biked with my son to my appointments, and we were always the youngest people in the waiting room. During one of the first times that he tried to wean me off the prednisone, I had a flare of pericarditis return, and I began throwing up.  I was so afraid that I would need to have surgery and another chest tube.  I ended up back in the hospital again with a smaller amount of fluid around my heart.  I waited for an echocardiogram to be done so that we would know the doctor’s intended plan of care.  During that stay, they tested me for more things like Valley Fever and Lyme Disease and had an infectious disease doctor consult on my case.  They pumped me full of steroids and even gave me some IV antibiotics.  But still, no answers came.  I was told that all of the tests were negative.  My sedrate and CRP were once again elevated, but not as high as they had been.  After several days, and me begging to be released so that I could get back to my baby and my classes, I was once again discharged from the hospital on prednisone and colchicine.

After this recurrence that landed me in the hospital, I got wise, and stopped going to the hospital for my chest pain.  Instead, my cardiologist would have me increase my prednisone back to 40 mg per day, and then we’d work to wean me off again. In the end, I was decreasing my daily doses by 0.5 to 1 mg per day over a week’s time!  The process was excruciating.  I’d get to 7 mg and have a flare and have to start back at 40 mg a day again.  This cycle continued this way for YEARS. I was referred to a rheumatologist who also had difficulty weaning me off the steroids, and attempted to add daily doses of injectable methotrexate to the mix.  I was taking medications for medications because of the side effects.

During this time, I was exhausted all of the time.  I remember, at times, choosing sleep over studying for big exams.  But, I held my own, and continued being the best Mom I could while also attending nursing school.  I worked to remain positive and hopeful that I would get answers, and eventually, my health back.  The steroids lent themselves to a weight gain of 40+ pounds over my usual weight, the typical moon-shaped face, and hump on my upper back, not to mention insomnia, and irritability.  I remember feeling like I was trapped in a body that was completely unfamiliar to me.  I had spent the better part of 10 years hiking, backpacking, and camping for work, and now here I was, afraid to exert myself physically for fear of triggering a flare of the chest pain.  Strangely, I was living my life pretty normally aside from my personal health struggles, and the people I met during that time had never known me to look any different.  So, I fell into the category of people who look fine and healthy to strangers, yet are facing major health challenges every day.  I have never been one to complain, and I was determined to become a nurse so that I could help other people who found themselves sick in the hospital, so many of my classmates didn’t even know of my health struggles.

During nursing school, I kept up with all of the other students.  I arranged my schedule around classes and clinicals, caring for my son and getting him to daycare, along with frequent doctor’s appointments.  In the summers between semesters, I was home alone much of the time caring for my son and juggling my appointments, the upkeep of a house and two large dogs while my ex-husband went on extended work trips to the back country.  I look back sometimes and am completely amazed at myself!  We humans are capable of handling so much, so very much.

It was my son who gave me the strength to move forward every day.  Every day, I pushed myself to get out of bed for him.  He motivated me to get us out of the house and go on adventures as much as possible. During this time, I struggled with grief for my lost health and also depression, but I never spent my days in bed crying, because my son needed me.  Thank goodness he needed me, because as it turns out, I REALLY needed him.  As humans, we all have a strong will to live.  We hear about it in stories of people in life and death situations.  My son multiplied my will to live and thrive in this life by infinity.  And for him, I am forever grateful.  My son is my sunshine.

Matisyahu “Sunshine”

…to be continued…

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My Blog Has Been Nominated for an Award!

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I woke up yesterday with a comment on one of my posts from Emma from a blog called Year of Vulnerability that she had nominated me for a “Real Neat Blog Award”.  She’s citing the vulnerability that I have shown with my writing as cause for the nomination. Funny thing is that I actually found Emma’s blog right after I had started my own when I literally searched blogs for “vulnerability”.  I find myself being pulled towards people who are moving beyond their fears and walls of protection to open themselves up to living more full, more free, and more joyous lives.  I highly recommend that you head over and check out Emma’s blog!  It is full of inspiration to just be yourself, step out of your comfort zone, and live for your own joy! Thank you, Emma, for the nomination, but more importantly, thank you for the continued inspiration and motivation that you give me to open up and be even more vulnerable and authentic in my own life!  One day, you and I are going to hang out and have a lot of fun!  I’m sure of it!

  • Here’s how the award works:

Rules:

  • Put the award logo on your blog.
  • Thank the people who nominated you, linking to their blogs.
  • Answer 7 questions asked by the person who nominated you.
  • Nominate any number of bloggers you like, linking to their blogs.
  • Let them know you nominated them (by commenting on their blog, etc).
  • Ask your nominees 7 questions

Questions:

Are you a perfectionist?

Oh yes!  I like to say I’m a recovering perfectionist.  I have realized that 1. perfection only prevents me from doing things that I want to do because it usually makes the task feel much more difficult to start 2. setting an expectation for myself of perfection makes me feel really shitty because true perfection isn’t attainable and 3. perfection is the cockblocker of creativity!  hahaha!  (I loved the quote on your page!) So short answer is yes, but that it is something I am currently working to overcome.

What is the scariest thing you have ever done?

Like you, Emma,  my crazy and scary are different from what some may say.  The scariest thing I have ever done is allow a person to cause me to question and feel bad about everything I did, said, and felt.

Who do you admire?

I have so many people in my life that I admire.  But, for this question, I will focus on one. My dear friend, Emie.  The Universe so kindly placed Emie on my path this year and my life has been better for it ever since.  I admire that she has faced many huge life challenges that she has overcome in such beautiful and profound ways.  Emie has four kids and managed to start a healing business devoted to helping others in body, mind, and spirit all while going through a divorce.  I am constantly in awe of Emie!  She juggles so much yet she emits such a radiant light that it’s nearly blinding!  Emie is such a shining example of how to live life to the fullest and she inspires me daily.  I am so lucky to call her my friend.  Check her out at: Balanced Living: Craniosacral Therapy, Massage Therapy, and Life Coaching

What trait do you love about yourself?

I love that I am adventurous.  I am always up for trying something new, traveling to new places, and meeting new people.  The Universe we live in is amazing and I want to experience as many cool things that bring me joy in this short life as possible!

What have you been giving yourself a hard time about?

I really want to change my current custody schedule with my son so that we have weekend time together.  I changed my work schedule to reflect this desire, so I am off every other weekend now, but our custody schedule has remained the same so far.  So I have not yet had my son during one of my weekends off.  And he has had to spend time with friends or a sitter when I’ve had to work during the week when I have him.  It’s been a difficult adjustment for both of us and I have been really hard on myself for changing my work schedule, because I don’t like missing any time with my son.  But I am doing my best to hold onto the fact that I know that our relationship will be better off when we have days off from work and school together during the school year.

Do you believe in yourself?

Yes!  It has taken me a lot of life experience to get to that point, but there’s no denying that I am capable of doing anything I put my mind to, because I have spent my life up to now flying by the seat of my pants doing just that!

Do you like being naked? (Seriously, I’m obsessed with being naked)

Haha!!  YES!!!  Funny you ask!  I have had some of the happiest moments of my life while I’ve been skinny dipping in the ocean, rivers, lakes, and hot springs!!  It seriously makes my soul so happy!  Skinny dipping is one of my favorite things to do EVER!!

I don’t have a lot of blogs that I follow yet, (and of course one of them was already nominated for this award), but a few that I have really enjoyed reading that I am going to nominate for this award are:

  1. Reclaiming My Time
  2. Skylarity

Note to Nominees:  I really appreciate the authenticity that you both show with your blogs!  I truly believe that the things that you write about are creating a positive ripple effect into the Universe.  You are helping to make the world a better place.  I am grateful for you, and the words that you share with all of us.  Thank you so much for being you! I’d love to read your answers to the following questions if you feel inclined to participate!

7 Questions for my Nominees if they choose to participate:

  1. Is there a specific experience in your life that you view as a sort of turning point for how you view/move through life and the world?
  2. What motivated you to start your blog?
  3. What is something you do that brings you the most joy in life?
  4. Who do you admire?
  5. What is one positive thing that has happened in your life recently?
  6. If you knew that today was going to be your last day in this life, what would you do?
  7. What trait do you love most about yourself?

Matisyahu “Driftin”