I have asked by mom to share her experiences with Lyme. She doesn't have it, but I think the caregivers of people with Lyme have a heavy burden of feeling helpless a lot. So here is my mama's side of the story:
I’ve heard it said that a mother can only be as happy as her
saddest child. I could probably conclude
my little narrative here by beginning and ending with that statement and you
would know enough about the feelings of my heart regarding Sadie’s experiences
for the last two years. But Sadie has
asked me to share my take on what it has been like to be the care-giver of a
pre-diagnosed, and post-diagnosed “Lymie”.
Since June 10, 2014, the day I
received a phone call from my Stake President, telling me Sadie was coming home
from her mission, I have defined happiness much differently than I did before
that day. Happiness is found in
gratitude for small things, some of which I will mention. I have
learned for myself just how powerless a mother can feel when there’s nothing
you can do for your suffering child, yet in turn, I know first-hand the
enabling power—the grace—the Atonement of Jesus Christ provides when nothing
else relieves the frustration, the deep sadness, and, yes, the ever-present
temptation to be angry with God.
She’s coming Home
That second week of June in 2014
still brings to mind very tender feelings.
A month prior to Sadie’s return from her mission, we learned of her
emergency room visit, of which she’s shared on this blog (Click here to read). Her mission president phoned to inform us of
the incident and expressed his desire and intent that Sadie remain in the
mission field. We knew Sadie was
experiencing some depression, but we didn’t know how serious it was. We felt
assured by her mission president’s phone call and kept praying she would be
alright.
As I look back on it now, we didn’t know just
how serious Sadie’s condition had been.
That’s where my sadness began:
She suffered so much in the mission field that last three months, and
suffered alone, except for the angel companion who endured it with her and
attempted to protect Sadie from herself.
When I learned about her last three months from our Stake President on
the phone, that Tuesday in June, and then again from Sadie’s own mouth after she
got home, I could hardly keep my emotions at bay. I was angry at a mission president who I
thought sugar-coated her condition so we wouldn’t worry. I was saddened that I hadn’t been there when
my own daughter cut herself repeatedly to release the anquish of depression in
her mind. I was frustrated with my own
spirituality—how could I have lived during those days not aware that she needed
help? Why wasn’t I warned? Or was I warned, and just didn’t listen? What kind of mother was I to experience joy of
any kind when my own child suffered so much?
It truly was a shock to hear that
Sadie was coming home. I was
deflated.
I had been weeding my morning
glory-infested flower bed when the call came that morning. I hung up the phone in tears, called my husband,
Jason, who was running a girls basketball camp at the high school, then
returned to my flower bed. I sobbed as I ran through all of the above in
my mind as I ripped out weeds in a fury.
After several days and nights of questions and way too much crying, I
determined that I would not be a mess when Sadie returned. I would get it all out before she got home
and I would be her rock. Sadie was not
going to see me cry! I received a
blessing from Jason, and our bishop, who offered advice and comfort.
Those days before Sadie returned
were busy—we had to do some explaining to her siblings, our extended family,
and our ward members. We had to prepare her room and adjust plans for our
family and time that had not been thought of for a year. It seemed I prayed hourly for strength. I was grateful to not be teaching school, as
it was summer. I don’t know what I would
have done if this had hit during the school year. One of the small things I found to be
grateful for.
Emails were sent to our ward members,
informing them of Sadie’s condition and asking for silent support. The most welcome and blessed email returned
to me the next day from a quiet sister in our ward whose son
had been treated for depression the previous year. She recommended a Dr. in our ward named
Andrew Petersen, who had treated both her son with depression, and her oldest
son who had returned home from his mission to Madagascar with a lot of sickness
that same year. She indicated that
Sadie’s symptoms of depression were most likely being caused by something else,
and that Dr. Petersen would work until he figured out what it was. It was comforting to me to have somewhere to
turn, as I didn’t know where to take her to get medical help. That email saved my Sadie’s life, and mine as
well. I made an appointment to see Dr.
Petersen within the next 10 days.
Into the Unknown
It’s hard to put words to what I
felt that first week or two after Sadie came home. The easiest way to explain it would be to say
that it reminded me of bringing Sadie home as a newborn—our first child—just 20
years ago that year. I didn’t know what would hurt her. What would upset her? What exactly did you do for someone with
depression? Was she depressed or was she just sad from having to return home
early? Sadie informed us in the car ride
home from the stake center after she got released that we needed to hide the
knives, scissors, her razor --sharp objects of any kind—so she wouldn’t hurt
herself. Jason and I would only look at
each other and think, “Really Sadie? You really would hurt yourself? Are you kidding?” Try explaining that to your other children
when they can’t find the kitchen knives. “What’s wrong with Sadie?” was
asked of me so much in those first few months.
I couldn’t really ever answer.
I never left her alone. When she went to the bathroom, she left it
unlocked, because that’s what she was told to do in the mission field, since her depression hit. It had even gotten so bad she was told to not even shut the door. I knew where Sadie was and what she was doing
almost 24/7. I held her while she
cried. I watched in horror when she
acted like she was 13 and slammed doors and yelled for us to leave her
alone. I tucked her in at night knowing
she would be awake for two to three more hours crying, afraid to sleep because
of the nightmares that haunted her. Her
bedroom light was left on all night many times during those first few
months.
Sadie soon became socially withdrawn. She loathed people. She could hardly go to church, and refused to
attend any single’s ward activities or social gatherings if it meant family
wouldn’t be there with her. If I left to
go anywhere, she asked to go with me. She
would go from kind and helpful, to rude and lazy in the same hour. It was a confusing and helpless place to be
as a parent. Should we treat her like an
adult, or scold her for her behavior? I felt like Jason withdrew from Sadie,
because he felt so helpless. He told me later that it was his own reaction to
feeling helpless. He just didn’t know
what to do.
I felt entirely alone trying to take care of
this fragile girl, who was capable of taking her own life if I didn’t keep her
buoyed up. The burden I carried was
heavy. My prayers for help were teary
and long, and I don’t remember much of what I asked for except begging the Lord
not to let Sadie end her life. I had
fasted for Sadie each Sunday during her mission, as my own motherly invocation
for blessings to be sent to my missionary.
I decided the fasting needed to continue. And so I fasted each Sunday for Sadie to have
strength, a diagnosis, medicine, peace, whatever would keep her alive. And I fasted for myself to know what to do
for her. Now, nearly two years later, I
still fast every Sunday for Sadie, and for whatever else needs attention. I longed to know what had possessed my happy,
kind, silly, laid-back daughter. She was simply not the same person I sent into
the mission field a year before.
Dr. Andrew Petersen
Andrew Petersen was the Lord’s
answer to my weepy prayers and weekly fasting.
I know it’s because we were in his ward that he paid Sadie a house call
and took her medical history right in our front room for nearly an hour one
evening on his way home from work and left us that same evening with a prescription
for trazodone to help her with her depression and sleep. A week or so later, he called for lab work to
be done and I sat next to Sadie and tried not to faint as 28 viles of blood
were taken from her in one sitting! “What on earth could he want
with all that blood?” I thought.
September 4 was a day I know Sadie will
remember forever, and a day I will never forget either. We met in Andrew’s office for a 90 minute Dr.
visit where he handed me a thick copy of Sadie’s labs, and proceeded to go over
the diagnosis of each one of them and what they meant. He drew on his whiteboard diagrams of cells
and described medical terms to us. I was
overwhelmed, yet at peace for the first time in three months. When he told Sadie she had tested positive
for Lyme Disease on not just one of the nation’s two trusted tests, but both, I
searched my mind for my own knowledge of Lyme and its causes. A tic bite!
When would Sadie have received a tic bite?
When Sadie remembered having gone
to the ER for treatment to her arm just after Christmas the year before while
in South Carolina, we all knew that was the bite (Click here to read this story). Symptoms of Lyme were everywhere on her body:
Bell’s Palsy on her face. Her mind a
frenzy of anxiety, forgetfulness, depression.
Lack of sleep. Pain in random
parts of her body. Weight gain. Loss of
Appetite. And on and on and on.
Then Andrew went to work. I watched a skilled man perform miracles over
the next year. We left that first visit
with more prescriptions than I’ve ever filled at one time! And our fight against Lyme Disease began.
Assembling the Defense
I returned home and began my own research
online of Lyme Disease. I was horrified
to learn of symptoms numbering in the 80’s, which could occur anytime and leave
just as quickly. It seemed as the months went on, Sadie got more symptoms. I began keeping a file folder on Lyme Disease
as it related to Sadie. That file today
is nearly 8 inches thick! My days were
spent phoning in prescriptions and then picking them up. We used four different pharmacies at that
time, as some drugs were compounded, some were unavailable at others or more
expensive, or our insurance worked better through a different pharmacy.
When I wasn’t phoning in or picking
up, I was on the phone with the insurance company, asking for authorization of
a drug which wasn’t prescribed for Sadie’s “condition”. I soon learned quickly that Lyme Disease is
not recognized as a legitimate, treatable disease among the medical community. It drove me mad at times! I felt so helpless ALL THE TIME. It motivated me to keep acting in any way I
could for Sadie. I couldn’t prevent her
symptoms from showing up. I couldn’t
help her sleep. I couldn’t stop the
nightmares. But I could fight the
insurance company. My fasting and
prayers became more specific: for certain drugs to be made available. Or for help to say what needed to be said to
the Insurance “Gods”. I became an expert
in medical claim forms and medical –ese.
I learned all the acronyms when the insurance would turn me down for not
having diagnosis codes or NPI numbers. Almost weekly, I spent hours being the
messenger for the doctor’s office or the pharmacy, relaying information back
and forth between the insurance company and the pharmacy. Sometimes this was
done on my lunchbreak between teaching.
Sometimes I would step out of my class to take a call from the pharmacy. It was mentally and emotionally
exhausting! Our finances seemed to be
drained constantly with the money needed to purchase Sadie’s meds.
I began keeping an electronic
document of Sadie’s medicines, so that I could have a record with me at all
times of what she was currently taking and what she had finished. I recorded dosages and how often she took
them. The document at one time ran into
the 40’s with the number of things Sadie was being prescribed. Sadie carried a backpack of her medicines
around with her everywhere. She became
tied to a schedule of AM and PM dosages.
If she’d been a child, I don’t know how I would have been able to keep
up. She was so dedicated to taking those
meds. She started saving her empty
medicine bottles as well, and claims she will build a castle with the empty
bottles when she’s cured someday.
Getting Worse Before it gets
Better
So many people would ask me how
Sadie was doing that Fall and Winter of 2014-2015. I never knew how to
answer. It was such a long, detailed
answer that was needed to explain that she felt awful. “Was she doing better?” I never knew.
I just believed. I tried to see
that the blessing wasn’t in healing, but in being diagnosed. So many people waited years to be diagnosed
correctly. Sadie was diagnosed in 9
months. It’s a scary, sick thing to admit feeling happy when we would hear
stories of others who had Lyme Disease. And it’s not that we were happy. It’s that feeling that you’re not alone. That someone else believes you. That someone else has a kid going through
this! We both became more aware of how
prevalent this disease really is.
Over the course of Lyme, Sadie and I read
books and searched the internet on healing chronic disease. One weekend in October Sadie woke up after a
sleepless night of itching. Her skin was
crawling. Nothing was evident—no rash,
bumps, redness, anything. Just a
relentless itching that wouldn’t go away.
She lay on my bed and cried out of sheer helplessness. I watched her
itch until she bled, SO very helpless to make it all stop. I finally gave her Benadryl and it knocked
her out for the rest of the afternoon.
Then I returned to my online searching and ran into the term “Herxheimer
Reaction”. As Sadie’s body fought Lyme,
so much of the dead bacteria would build up and the body’s inability to detox itself
fast enough would develop a reaction-a Herxheimer Reaction. It was the body’s way of saying “Help me
detox! I’ve killed so much dead
bacteria; I can’t get rid of it all!” I
learned that Sadie’s body was healing if she was “Herxing”. I texted Dr. Petersen and he once again
verified what was happening. The
all-body itch was Sadie’s herx. And more
would follow. We learned that, in
addition to itching, Sadie would have flu-like symptoms. She wouldn’t be able to get out of bed. She would hurt all over.
We learned that Herxing was most
prevalent around the full moon. The more
I researched about it, the more I felt I was going crazy! Sadie’s body was electromagnetic. When a thunderstorm or a full moon was present,
she would Herx. It was the most
frustrating thing to pray for healing and know that it was happening when Sadie
would Herx each month. I didn’t know
what to pray for. I didn’t know whether
to be grateful that Lyme was being defeated, or pray that the Herxing would
stop. That’s when I learned about
grace. The enabling power of the
atonement gives us the ability to do what can’t be done otherwise. Sadie was blessed with the power to endure
what was killing her physically. I was
blessed to endure the helplessness of watching it happen.
I hated the Lyme inside her! I hated tics!
That anger I felt the week she returned home from her mission would
resume all over again each time Sadie herxed.
This disease was a monster! It
fought back! As the body healed, and
Lyme was killed, it formed a defense against the meds and Dr. Petersen would
prescribe something new. If Sadie missed
a herx one month, Dr. Petersen knew it was time to switch up the meds again and
try something else.
Treating Sadie, not the disease
During these months of herxing, I
became educated on how the body heals itself.
I learned that it takes a 5-prong approach to healing Lyme:
1) Antibiotics. We had
to kill Lyme with drugs. I was offered a
lot of well-meaning advice from relatives and friends on the dangers of too
many antibiotics. To have heeded that
would have been ignorant and just plain idiotic, to say the least. God gave us modern medicine for a
reason. Dr. Petersen knew what Sadie needed and playing
the “natural” card would have been ignoring his expertise.
2)Detoxing: Sadie had to get rid of the dead bacteria in
her body. Another small blessing at this
time was our beautician, who told me during a haircut that she got a gym pass
purely to use their sauna to “sweat out” all the toxins she inhaled giving
perms and hair colorings. That was
it! Sweating it out! Sadie didn’t enjoy it, but her trips to the
gym sauna were detoxing her body. She
would be so exhausted after a trip to the sauna, she wouldn’t be able to drive
home. I would go and sit in the car
while she went, just so she would go. The
health food store became a weekly stop for me as we became more educated on
what Sadie’s body needed to detox. I
learned about green smoothies, those with kale and spinach. They detoxify the body as well as replenish
it with needed vitamins. Our Blendtec
mixer became more than a smoothie maker.
3) Exercise: How do you ask a Lymie to get up and
move? They can’t even get out of bed
some days. But Sadie needed physical
activity. Another blessing was having
her cousin, Kirsten move down from Idaho and the two of them attended a
Thursday night Hot Yoga class, where the instructor would turn up the heat and
do yoga. The sweating was exhausting,
but it relieved her bacteria-ridden body.
The exercise always seemed to build her spirits. She came home happier
and slept better after yoga.
4) Diet: Sadie learned that she
needed to relieve her body of inflammation.
One Lyme Disease site we read indicated she needed to become free of
gluten and sugar. For Christmas that
year, I received a Gluten-Free Bible.
The big elephant in the room called “Gluten-Free” scared me to death!
How did I cook GF for one and maintain our family’s dining habits? It was shortly after this that my own thyroid
condition, Hashimotos, worsened and my doctor strongly persuaded me to give up
gluten as well. Though I didn’t give it
up entirely at the time, I knew there was now one more reason for me to pursue
domestic knowledge of gluten-free cooking.
It was a blessing in disguise to be sure. Sadie was determined and highly
motivated. She wasn’t as strict with the
sugar, but she was blessed with so much determination to change her diet. She admittedly felt better when she quit
eating gluten. And now as she has access
to Low-dose Immunizations (LDI’s), she must be sugar-free and gluten-free
in order for those to work. It was
nothing new for her to step into this new realm of medicine, because she was
already in the habit, and recently has also quit dairy as well.
5) Natural remedies: With Dr. Petersen’s help, as well as our own
internet-based education, we learned about essential oils and even natural food
remedies: Clove oil and turmeric were
prescribed to help in bile production and liver detox. Ginger helped aid stomach pain. Sadie needed a heavy dose of probiotics to
replace the good bacteria the antibiotics had destroyed. I read about liquid silver and how it robs
Lyme bacteria of oxygen, basically killing it.
At a routine chiropractic adjustment, our chiropractor, knowing of
Sadie’s Lyme diagnosis, told me he had access to colloidal silver and sold me a
bottle on the spot that day! Another
blessing! This same chiropractor
referred me to a “healer” who used suction cups and read tongues, in addition
to acupuncture to relieve pain and inflammation. Having a child with Lyme Disease drives you
to desperate measures. Before Sadie’s diagnosis, I would probably never have seen a healer. I thought alternative medicine was for crazy
people. Whenever I came across something
in the alternative realm, I texted Dr. Petersen to make sure it was safe and to
see what he thought about it. Not once
did he ever negate my findings. Many
times he would suggest a certain brand of something or suggest a dosage to
me. All of these things worked for
Sadie.
Don’t forget 6 and 7
The 5 healing prongs above are generic for most Lyme patients. My Lyme
patient needed several more.
6) Sadie’s mind was invaded.
Depression and memory loss are some of the first and most lasting
symptoms of Lyme disease. Though I try
not to put a lot of thought into it, it’s a fact that Sadie faces an increased
chance of developing Alzheimer’s at an early age due to the results of
Lyme. One of the most frustrating things
we have faced is procuring Donepezil, a drug used to treat Alzheimer’s, and
those like Sadie who suffer from the same symptoms, but the insurance companies will not
approve it for Sadie.
Sadie has
been very self-aware during her disease.
She knew when something was wrong in the mission field. She knew she wasn’t well when she couldn’t
remember normal, everyday things. When
she couldn’t read and remember a simple sentence, she panicked. As Lyme progressed, she couldn’t read Harry
Potter, her long-read favorite series.
Depression robbed her of normal emotion.
As I mentioned, she cut herself to divert that pain to something she
could control. Anti-depressants and
stimulants like Adderall were prescribed to help her get out of bed and then
fall asleep at night. But it wasn’t
until Sadie wrote us a plea for help on paper one evening that I realized
medicine wasn’t enough. She informed us
she needed more help. She couldn’t cope
with what Lyme was doing to her and what she was reliving every night in her
dreams. She needed to talk to someone
and get help for her emotions. Once
again, Dr. Petersen was texted, and he paid our house a visit that night. He gave us the name of a professional
counselor who helped those with chronic disease cope with life. It was that night in October that I learned
that the leading cause of death for a Lyme disease patient is suicide. They just get sick of being sick!
Tristan
Morgan and then Garret Roundy became lifelines for Sadie. She began weekly counseling sessions with
them the next week, and continues to see them as needed. With Garret’s help, Sadie was able to
separate Lyme symptoms from PTSD and receive counseling for the hurt and
heartbreak of returning early from her mission.
I feel guilty admitting that, at times, I really questioned why she
needed to see an expensive counselor.
Couldn’t we talk her through her problems for cheaper? It’s a selfish question and one I regret ever thinking. Counseling provided Sadie
not only additional healing, but an outlet for her to release. Her blog, blamethetick.blogspot.com is a direct result
of their healing for Sadie. She has
become a gifted writer, and through written expression she has helped heal not
only her own pain, but that of others who have returned home early from
missions and continue to suffer emotionally.
Hundreds have expressed feeling the same things Sadie has felt, but
didn’t have any words to say it.
7) Faith in the Gospel of Jesus
Christ--The final approach to caring for someone with a chronic disease such
as Lyme. It would be impossible for Sadie to be on any healing path without the
power of the priesthood. There were
many, many blessings given to Sadie not only in our home, but at her college
home in Idaho. We were blessed to have
two good neighbors who came night or day to help Jason give blessings to
Sadie. One of these neighbors answered
the call, and as we opened the door, he announced “It’s a full-moon tonight,
isn’t it?” with a smile on his face.
Paying tithing. Wow. I’m a believer. The windows of heaven have been opened. There were so many times I questioned where
the money would come from to pay one more doctor visit or how we would afford
the medicine Sadie needed. It was always
there.
Fasting and prayer. As I already mentioned several times, is
the key to power. Fasting and prayer together invoke the enabling grace promised
in Ether 12:27 that those things in which we are weak can become our strength.
Church attendance. Sadie’s young
adult ward and her bishop were tremendous faith-builders for not only Sadie,
but me as well. She was surrounded with
good people who gave her opportunities to serve. She slowly started to make a few friends and found confidence to
reach out again, much like she did on her mission. Sadie found joy in going on
splits with the sister missionaries.
They ate at our home monthly for almost a year during this trying time
for Sadie. I don‘t think they ever knew
how much Sadie needed their splits, and how much she ached to be doing what
they were doing.
And lastly, the promise given by
Elijah that the hearts of the fathers will turn to the children: I place a lot of faith in that prophecy. As I have done family history work for my
ancestors, they in turn have promised to turn their hearts to me and my
children. They have been close to me and
I know there have been angels around me and Sadie both to help us bear our
burdens.
Blessed
This is all an extension of #7
above. I believe I was blessed to find
the help when it was needed. Whether it
was my beautician, my chiropractor, or my mom, there was always something or
someone with an idea that helped when we needed it: A neighbor who suggested a
good doctor. Another neighbor who helped
give blessings. While I lamented constantly that I would be a better care-giver
if I didn’t have to teach every day, it’s because of my job that we have health
insurance. That health insurance
deductible has been maxed out for the last two years! Without my job, I don’t know where we would
be.
The
pharmacist and pharmacy techs were blessings.
They became my friends, who greeted me by name and knew what I needed as
I stepped in the door. That’s how often
I was there! They were sympathetic and asked how Sadie was
feeling each time I went in. The
pharmacist offered his own advice and encouraged me each time my bill was
through the roof!
Modern
medicine at the hands of a knowledgeable doctor can work miracles. Dr. Petersen and those who worked with him
have been the gasoline in the healing vehicle.
How lucky we are to live in a time when there is so much known about the
body and how we can help it.
Final Thoughts
Care-giving for me
meant paying for medicine, doctor visits, and counseling appointments. It meant setting up doctor visits, calling
the insurance company and the pharmacy. It was learning to cook gluten-free
when I didn’t think it was possible. It
was trying new alternatives to the usual course of medicine. It was wearing the green bracelet “Broken
Crayons Still Color” and signing my name to Lyme disease legislation in
Washington D.C. It was flying to South
Carolina with Sadie so she could attend the sealing of a family she helped
activate. It was hiding the razor and
demanding it back when she finished.
It’s attending the temple and putting her name on the prayer roll. Care-giving means faith-driven living and
then acting on that faith to produce needed blessings. I don’t brag or mean to seem proud about anything
I’ve done as Sadie’s care-giver. Any
other loving parent would have done the same.
May 12 is
Lyme Disease awareness day. It is also
Sadie’s birthday. It’s an irony, or
course. The day that reminds me to be
more aware of Sadie’s lifelong disease, is also the day we celebrate her. However, I would be amiss if I didn’t admit
that May 12—anyway observed, has made me more aware of God.
This mask is the "I'm happy" mask. I wear this mask when I'm dealing with depression. When I feel I've sunken into the deep dark pit again, this mask comes on. This mask isn't worn all the time. I don't wear it as much as I used to, but it is for any day I am just feeling depressed, wether I have a reason or not. I sometimes feel like this mask has a super power. That it makes it so that my depression is invisible. I always feel really accomplished when I talk to someone and I mention I deal with depression, and they almost don't believe me, or are surprised. It makes me feel successful, because my mask is working. 
