Thursday, May 12, 2016

A Mother's Perspective on Lyme Disease


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.