Navigating Through New Lands: Part 3 of my Health Journey

Photo: A glimpse of my planner for September 2012

It has been a while since I shared parts of my healing journey, so if you need a recap, you can read Part 1 HERE and Part 2 HERE.  I had a pretty nasty herx during that visit to Colorado, and wasn’t expecting that severity of chest pain again, along with vomiting and diarrhea.  So I got scared, and went to the local clinic and asked for a prednisone prescription, because it was the only thing that I knew would take the chest pain away. The chest pain was severe, and medications would not touch it.  At the time, I didn’t really put two and two together that I was having a reaction because of the injection of antibiotics I had gotten from the doctor in LA. I hadn’t really thought about the fact that antibiotics would cause my symptoms to worsen before they got better. So I wasn’t prepared to handle the 10/10 chest pain that I was experiencing. I was far from home which meant I was far away from my primary doctor or my cardiologist who could prescribe pain medication for me.

So, I did what I could to get through that time.  I took the supplements that the specialist had given me, and followed the guidelines of things I could do to lessen the herx reaction.  I was forced to lay low, and missed a lot of the fun activities with family during that trip.

I had been instructed by the specialist to have my prescriptions for antibiotics filled when I got home from Colorado and to start taking them at that point.  I started treatment on July 12, 2012, and my world was again turned upside down.  The chest pain, high fevers (up to 103 I believe), and general malaise were unbearable at times, and I really felt like I would die.  I was doing so terribly that my husband at the time arranged it so that he could work from home, afraid that something might happen to me while he was gone.  Aside from the initial instance of illness where I passed out repeatedly from near heart failure, this time in July and August 2012 was the scariest time of my life to date.  I did little more than lie on the couch in pain, sleep, and get up to use the bathroom.  Walking to the mailbox that was about 30 feet (10 meters) from our house was unbearable, because of the severity of my chest pain.  All physical activity aggravated my pain.  I was essentially on body-enforced bed rest with a 3 year old who needed me and didn’t understand why I wasn’t the one mostly taking care of him anymore.  That was really difficult for me.

I ended up getting hooked on the show “The Walking Dead”.  I learned pretty quickly that laughing at comedies, and crying during dramas made me hurt worse.  At that time, zombies created very little emotional response from me, because I viewed it as completely fake and unrealistic.  The summer of 2012 was a bit of a blur.  My severe herx lasted for about a month.  Pain medications prescribed to me by my cardiologist began working, though I was having very strange arrhythmias that I could feel.  For my friends in healthcare, on July 20th, I found out that my CRP was 491 (normal is 0-3) and my sedrate was 103 (normal is about 0-29)!  I ended up having a 24 hour heart monitor placed at one point, but then it the weird heart beats stopped and nothing was revealed.  I remember going to my primary care NP during this time, and speaking to her about how awful I was feeling and how scared I was.  She encouraged me to keep track of the kinds of days I was having by drawing a smiley face, neutral face, or sad face on each calendar day of my planner.  I encourage you to try this method for yourself if you’re experiencing a lot of ups and downs with your health right now as you move towards healing.  It can be a good way to realize that you DO have good days.

I was nervous about heading into my last semester of nursing school with the way my summer had stacked up.  I honestly didn’t know if I would be able to complete the program.  I emailed my teachers to let them know that I wasn’t sure that I’d be finishing with the rest of my class.  I knew that if the chest pain and fevers persisted that there was no way that I could focus on school and physically be able to walk to all of my classes.  But luckily, as the days went on and I continued to take all of my medications and supplements to help with my herx reaction, I started having more smiley face days, than frowns.  On August 4th, I actually got to leave the house and went to a local baseball game with my family.  It felt so good to be outside again.  Aside from doctor’s appointments, I had not left my house in nearly a month!  By August 15th, I was back in my first lecture of my last semester of nursing school.  My planner from that semester is loaded with classes, assignments, clinical shifts, doctor appointments, and events and sports related to my son.  Remembering back to how i felt during that time, and seeing the fluctuation in smiley faces and frowns (that persisted into October), I am amazed that I pulled it all off!!  I completed the semester with my class and went to my Pinning Ceremony on 12/13/12.

By the end of that year, I was feeling a lot better.  In fact, I only kept track of my good and bad days into the beginning of November.  I was feeling more back to myself, and because I had been off of the prednisone since July, I was losing the extra weight gradually.  I don’t think I was prepared for my emotions that released following my Pinning.  The whole thing had been emotional, listening to students and our professors speak, one of which was undergoing treatment for brain cancer that eventually took her life.  She had been the one who fostered my love of working with the babies.  After the ceremony, some of us went outside.  It was just us students.  And I started bawling my eyes out.  I was excited, sure, after all I had worked so hard for this day and had overcome so many obstacles to get there.  But more than that, it was like this thing that I had been focusing on for so long was no longer my focus.  I realized in that moment how much school had been keeping me going.  It redirected my focus and allowed me to focus on something bigger than myself, bigger than all of my problems at the time.  It felt like all of my accumulated stress and sadness of the last 3 years began flowing out of me through my tears.

This portion of my story culminated with me taking and passing the NCLEX exam in January, flying home with my son to see our family, and then landing my first full-time Registered Nurse position in the local hopsital on the oncology unit that I started in March of 2013.  As this was happening, my marriage was coming to a close.  By May of 2013, I was living on my own, working full-time as a Registered Nurse, and taking care of my son on my days off.  I continued traveling to LA (and then to one in San Francisco) regularly to see my Lyme Disease specialist and was having my labs closely monitored.  I continued taking oral antibiotics daily, as well as other medications, and many handfuls of supplements.  I was tired after my 12 hour shifts in the hospital, but my heart felt full, because I was using my experiences to help other people.  I used what I had been through to draw in even more empathy and compassion for all of the patients who crossed my path.

I began to feel a lot better, because I was no longer hiding my truth behind the busyness of nursing school and I was following my intuition to a new life for me and my son.  It took moving through a lot of fear.  I had to let go of a lot of ideals I was holding in my mind’s eye.  I had, after all, really wanted to create an intact and happy family for my son that I did not feel I had as a child.  I had to let go of something I had comitted to, because I had to start fully putting my happiness and health first.  For so many years of my life, I had always put myself last, not feeling worthy of love, not loving myself.  My illness forced me to put myself first for a change, and it was a very uncomfortable process.  But I can tell you that from where I am now, it was a very necessary process.

You see, I have now worked intimately with thousands of people as a Registered Nurse, and I also have people reach out to me now with serious, mystery health issues of their own.  We all seem to have a common thread, an underlying lack of self-love.  It can take years to recognize it.  Maybe you’re reading this and can relate, or maybe it will open your eyes to it for the first time ever.  Think about it:  do you take good care of yourself in all ways? Do you love and accept yourself (and show it) fully? Are you always putting other people’s needs or the seemingly endless needs of the world before your own?  Do you supress your emotions to make other people feel more comfortable?  Are you a people pleaser and/or a peace keeper?  We’ve all got to dig down deep to get to the cause of our dis-ease, or lack of enthusiasm about our lives.  I have found self-love to be paramount to my healing in all ways body, mind, and spirit.

If you’re struggling with chronic illness, I encourage you to really look at your relationship with yourself first and foremost.  Loving myself and taking good care of myself has been my biggest, foundation-building lesson from my dis-ease.  Even at Part 3, my healing journey did not stop here…to be continued.

Work With Me

If you’re on a healing journey of your own, and are feeling overwhelmed reach out to me at peacefuljellyfish@gmail.com.  I would love to work with you to create some healing and transformational magic in your life!

Thank you for reading!  If you liked this post, please like and share it.  Much love!

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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