Blessed Beyond Measure

Now...

I am blessed beyond measure!   How, you might ask, can I say that and really mean it considering the circumstances of my life.  I have a son who has walked out of our lives and rejected our faith and beliefs.  Heart wrenching!  I have a godly daughter who is seriously ill with Chronic Neurological Lyme Disease.  While friends and acquaintances my age are trying to decide what their grandchildren will call them, I am preparing myself to accept that I may never have any grandchildren.  The medical bills continue to roll in.  Most of the medications and procedures to treat Lyme are not covered by insurance.  My days are spent caring for a 25 year old college educated child who on some days can not even get out of bed because of the pain.

But, I am blessed beyond measure! 

Here is how I can say this and really mean it.  Today, as most days, I went over to Robin’s house at 2:00PM.  Snickers went with me today because Robin says he is therapeutic.  I gently open her bedroom door and watch her as she begins to wake up.  Yes, at 2:00PM she is still sleeping, because at 7:00AM she is still awake trying to cope with the pain.  I hate to wake her because she looks so peaceful, but I know I must.  I give her a drink of Burbur and Parsley, herbs that help settle her nervous system.  I go to the kitchen and make her a gluten free waffle and a cup of coffee.  As she eats, we talk about her evening and I get an idea of just how bad her night has been.  Last night was particularly bad.

I asked Robin what she thinks about when the pain attacks come.  She says that sometimes she begs God to take her.  Other times she concentrates on Ken, and her Dad and myself and how much we mean to her.  Today she shared with me that despite the pain and the isolation, she knows that God is still good.  Even when the pain is so intense that she cannot control her body and she flails all over the bed, she acknowledges that God is good.  Tears begin to flow as the words spill from her heart about her struggles and her hope and her faith.  I can’t repeat word for word all that she shared with me today, but I will tell you that when we both were overwhelmed with our tears, I knew that I had experienced something that most of my friends and acquaintances will never experience.  I have seen into the heart of my daughter.  What I see there is a sweet, strong, godly woman trying to make sense of the suffering.  Trying to find the good in a tragic situation.  As is often the case, she talks of how her suffering is preparing her to help others who are in pain.  She wants her suffering to be a bridge for others with undiagnosed health issues, to find help.  But ultimately, she prays that her experience with a chronic illness will point others to Christ. 

I love my daughter.  I love her heart.  We did not choose this path in life, but God knew that we must travel it together.  I am so proud of Robin for her determination to stay in the fight despite the sleepless nights of pain, the shattered dreams, but especially for her decision to praise God in the toughest of times.  He has worked out every little detail from providing a Lyme literate doctor in our area, to a job for Ken and an apartment and then a house at just the right times.  Were it not for Lyme, I doubt my daughter and I would share our tears, our hearts or our breakfast as we did today.  God is surely good all the time!

That is why I can say I am blessed beyond measure! 

And Then...

To be continued…..

Robin's Freshman Year at Bob Jones

Now...

Life has been extremely busy lately!  Ken's parents were in town for a few days and we enjoyed spending some time with them.  They are so supportive in our efforts to beat Lyme disease.  David and I appreciate them so much!

Sunday was Robin and Ken's second wedding anniversary.  Ken made the day very special for Robin even though she was in a lot of pain and extremely tired.  She has finished the second round of parasite drugs and her body is ready for a break.  She will be detoxing for at least a week before starting the next drug.  Please continue to pray for Robin.  She wants to be up and doing things, but sometimes her body just will not let her.  This is one of those times.

Yesterday we received an email from her doctor saying that he had met with the people who help him with the documentation requirements for the IGIV treatment I spoke of HERE.  Their recommendation was to have Robin tested again at the end of August and if her immune function has not improved by then, she would be a candidate for the treatment.

Since I started writing about Robin's journey with Lyme disease, I have been able to talk to three people who have a friend or family member struggling with a health concern that their doctor cannot explain. Here is a link to a post that Robin made to her blog about a year ago. It has some good information about neurological lyme.  

And Then...

**Please note that this is my recollection of Robin's story.  When she was in college, I did not see the pain in her eyes as she struggled through her days.  We talked every day, sometimes several times a day, but I did not grasp the severity of her situation.  I pray that she can tell her story as she remembers it in the near future.

We have all used the phrase "mind over matter".  That is how I describe Robin's freshman year of college.  David and I took her to Greenville, SC and moved her into the dorm room that she would share with three other girls. It was tight!  It seems that she locked the pain away in a box, threw away the key, and decided to enjoy the college experience.  I know that the pain was still there, but she rose above it and participated in most all the activities of her first year of college.

This picture was taken on our first Sunday at Bob Jones. David and I left for home that afternoon.  All you mother's out there know exactly what I did for the first hour of our trip!  Yes, I shed tears.  Some were tears of joy, but there were also tears of concern and helplessness.  I was (and am) so proud of the young lady our daughter had grown to be.  I trusted her to make wise decisions, but I knew in my heart that there was something wrong, physically.  I would miss her so much!

Robin wasted no time to get involved.  Along with her school work, she managed to play basketball and volleyball.  She was active in her society and service extension.  She made lots of new friends and seemed to love college life.

Looking back on this now, it was cruel of me to insist that Robin not come home until Thanksgiving.  Other parents had advised me that giving her that time to adapt would ensure that she would not get homesick and want to drop out of school after the Christmas break.  I can't change that decision now and I suppose it was meant to be just the way it happened.  I directed my attention to updating some of the rooms in our house.  Wallpaper came down, new paint and flooring was added.  We even invested in a few new pieces of furniture.  This kept me busy until time to return to Greenville to get our girl.  She had befriended a girl from Canada who was not able to go home for Thanksgiving, so Krista spent the holiday with our family.  It was a short break and we stayed very busy, so I didn't notice that Robin was showing signs of fatigue and pain.

Christmas break started early due to an outbreak of whooping cough on campus.  Robin was not affected, but she spent her break trying to catch up on sleep and good nutrition.  She would return to Bob Jones in January and was able to complete her freshman year in May 2008.

By this time, we (David and I) were accepting that our daughter needed more rest than most young people.  The doctors could find nothing wrong and her symptoms were not specific.  The pain seemed to moved from place to place in her body.  The one consistent point of pain was her neck.  Physical therapy seemed to help, but by the end of the school year, she could not tolerate the pressure from the therapy.

A Time of Transition

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Thursday night, we had the pleasure of spending time with some of Ken's family.  Jennifer and Bryan (Mom and Dad Troutman) are in Raleigh for a few days visiting relatives in the area.  Abby (Ken's sister) and her husband, Craig, were just passing through.  We enjoyed grilling hamburgers and hot dogs in spite of the pouring rain!

Robin was able to come over and spent several hours in conversation.  She is still in a great deal of pain, but does feel that the parasite treatments are working.

Abby and Craig will be leaving soon for a two year missionary assignment in China.  You can follow their work by signing up HERE. Ken's other sister, Sarah, is already in China with a missionary team.  It amazes me how GOD has worked to bring this precious family into our lives.  Robin has always had a heart for the people of China.  In 10th grade, she chose Watchman Nee as her missionary biography report.  It was on our visit to Florida the following summer that David's dad revealed to us that Watchman Nee was a relative of ours.  Since that time, Robin's interest in her Chinese ancestry has grown.  I will share more on this subject later.

Just a quick update on Robin's condition--insomnia and pain are the biggest concerns currently.  She has been on some of the pain medications for well over a year and her doctor wants her to start reducing the dosage.  This causes side effects such as irritability and migraines.  Managing this along with the pain she has from the Lyme is challenging.  My resolve is to be patient, loving and kind--no matter what is said or done.  That is most difficult when I am tired, but GOD has given much grace in this area!  So thankful for HIS grace!

We received an email from Robin's doctor on Friday and the blood tests done last week indicate that Robin's immune system is in decline since the last time it was checked.  This moves us one step closer to becoming a candidate for the IVIG procedure that I mentioned in a previous post.  We should know more in a few days.

And Then...

The summer of 2007 was busy, exciting and confusing!  Shortly after graduation, Robin was back in NYC with her youth group, helping a church on Long Island.  The group "sparkled" their way through the city, making great memories.

Robin remembers having some back pain on this trip, but was able to keep the pace.

In mid June, we travelled to Roanoke for my niece's wedding.  This was an exciting time for our family, as Riley was the first of the cousins to "tie the knot".  They had a beautiful venue at a mountain top winery.  What a gorgeous view!

My recollection from this trip was that Robin just wanted to sleep.  Looking back on it now, this is when I could sense a change in our daughter's personality.  Always outgoing, she was beginning to turn inward.  It is a change that did not occur overnight, but gradually.  She still enjoyed being around people, but was spending more and more time alone.

As the summer progressed, we saw more and more changes in Robin's behavior.  We thought she was excited about going to Bob Jones University in the fall, but she was making no effort to get her things packed.  David and I worked during the day and on many days we would come home to find her still in bed.  She said the pain was horrible, but it was not localized.  On other days, she would get up and clean the house or have dinner ready when we got home.  Nothing made sense.  David and I concluded that Robin was working through some emotional issues that, in our parental wisdom, all teen agers went through at some time or other.  Robin had always been very steady and quite mature for her age.  This had to be the problem.  We decided to give her time to sort things out.  We knew she would talk when she was ready.

Our church had a special Sunday evening service in July to celebrate our freedom in Christ.  There were fireworks after the service and ice cream and watermelon!  Robin's normal Sunday night routine included after church fellowship with the other young adults.  There was no way Robin would miss a special night like this! But, she didn't even make it through the service.  We were concerned, so we went straight home ourselves.  She was lying on the floor crying and rolling from side to side in extreme pain.  We were ready for her to see a doctor.  But, the pain would subside, so we didn't go.  The rest of the summer was marked with these unexplained pain attacks.  They would come and go and she had a hard time explaining what it felt like.

Robin seemed to rebound somewhat in August.  We were able to take the family vacation we had planned for mid-August.  Cincinnati, here we come!  This is my favorite picture from that trip!

Cincinnati Zoo - 2007

Back home and just a few weeks before the first day of college, and Robin has done NOTHING to prepare.  I was a complete nag for about a week and then I surrendered.  I did not want my daughter to feel that we were pushing her to go away to college.  Maybe she was having second thoughts about leaving home.  Maybe she wanted to stay home and attend college locally.  Maybe she just wanted to work.  When I asked her these questions, she was adamant - "No, I am going to Bob Jones!"  

After what seemed like an endless summer of tug of war, Robin packed her bags and was ready to leave when the day arrived.  I was relieved but troubled.  The summer had been a roller coaster of emotions.  One day there was pain, the next day there seemed to be none.  There was something bothering Robin, but she was convinced that God wanted her at Bob Jones.  So off she goes......

Consequences of An Unhealthy Immune System

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We made it to Friday!  Our prediction for this week was one of herxing and debilitating pain.  Unfortunately, we were right.  Robin experienced some nausea from the Biltricide, but the most notable side effect has been the increased pain in her back and neck.

Today she will have a blood draw to check her immune system function.  Our doctor is monitoring this to see if she is a candidate for a procedure called Intravenous Immunoglobulin (IVIG).  After years of fighting the infections in the body, the immune system, understandably, needs a break.  When this happens, the parasites and unfriendly bacteria go on the offensive.  If Robin's lab results indicate an under-functioning immune system, our insurance company should approve her for this treatment.  We were told that each round of this treatment costs roughly $15,000.  There is no way we could afford that without insurance coverage.  Robin is quickly approaching her 26th birthday, so it is imperative that we stay on target with getting the documentation necessary for our insurance to cover this procedure.  Our doctor has been told of Lyme patients making amazing strides in their treatment after having this procedure.

So, that is my prayer request to all my readers--if it is GOD's will, the blood tests will indicate that Robin is a candidate for this procedure AND that our insurance company will approve her for treatment quickly!

And Then...

Let me remind you of the date--it is May 2007.  Think back with me to that time.  What pharmaceutical product do you recall seeing during every commercial break while watching TV?  I am talking about Gardasil.  

Robin was urged to have this vaccine every time she went to see a doctor.  It was presented as mandatory, that I would be negligent if I did not consent for her to get this vaccine.  I read what was available at the time and I had some questions.  Robin did not fall into the subset of girls who were at greatest risk, but the pressure from health professionals was intense.  David and I discussed the issue and decided to get the advise of someone we trusted, who was a doctor in another state.  Her response was that Gardasil is a good product and that her own daughters were having the vaccine.  After much discussion and prayer, we decided that Robin should have the vaccine.

The Gardasil vaccination completes the triangle of elements that have made our daughter so sick.  I want to share with you the timeline that our doctor and his staff have helped us to develop.  It is easy to just accept the consequences of events that you would repeat, such as going on a mission trip to Honduras, or a camping trip with your father.  It is not so easy to accept the consequences of a decision made, based on aggressive marketing of a pharmaceutical company and the negligence of government agencies that failed to do comprehensive testing before recommending the vaccine for ALL girls ages 9-26.

Check out some stories of girls who have suffered due to this vaccine.  Many of them are similar to Robin's story.

But, as I said, there are three events that put us on this long and arduous journey.

Summer 2006 - Trip to Honduras - swam in unclean water, pulled leeches from abdomen after swimming, rash and low grade fever initially, neck and back pain on-going

May 2007 - Father/Daughter camping trip - over a dozen ticks removed, low grade fever and fatigue initially, neck and back pain increasing in intensity, all over muscle and joint pain

May - Dec 2007 - Gardasil vaccinations - our theory is that because her immune system was already compromised from the first two events, her body had an adverse reaction to the components of the vaccine.

The immune system--so important for our bodies to function as God intended.  When it is damaged, we suffer physically, emotionally and spiritually.  As Christians, we are not immune to making unwise decisions.  If we are not living in a way that supports a healthy spiritual immune system, we are more prone to bad decisions.  Was my immune system healthy during this time frame?  My prayer journal would indicate that I was too busy to spend quality time in God's Word and prayer.  I deeply regret this!