Glimpses Into Chronic Illness: A Letter to Lyme

Dear Lyme,

Nine years ago you, wormed your way into my life without me knowing it, joining your friend mold who was also wreaking havoc on my body while I was oblivious to his unwelcome invasion.  You tormented me for two years, leaving me to think I must be crazy, ashamed and guilty for the misery from the constant pain and vertigo you brought with you.  Coworkers, family, and friends didn't understand what was happening to me.  They tried to help with their suggestions for different diets, detox protocols, hormone replacements, therapies, exercises, and other tips that might help.  Some suggested that Satan was the culprit and I needed to turn to the Lord and repent of my sins.  Doctors suggested I get some counseling to deal with my emotional instability.  No matter what I tried, nothing worked, and I felt alone, abandoned, and ashamed of my failure.  Once you made yourself known, it was too late, and then I found out that your unwelcome presence wasn't enough for you.  You came like a thief in the night and brought along all of your buddies.  Bartonella, EBV, Candida, Mycoplasma, West Nile, and host of other parasites and bacterium decided to join the party.  You and your friends attacked my intestines, brain, and nervous system; and you decided to invite the big guns when you brought in the fighters to attack my cells, immune system, and the myelin that protected my nerves so they could communicate effectively. You gave me metal toxicity and food allergies so that I could not tolerate eating a normal diet anymore.  You took away my energy, balance, and my mobility.  Once my doctor put me on antibiotics in an attempt to take you out, the toxic exposure from your "die off" was my undoing, leaving its permanent imprint on my already weak and compromised body, causing a severe case of POTS with tremors and heart palpitations as well as a host of chemical sensitivities and other reactions that would cause me to be bed ridden for months and housebound for years. 

 Didn't you know that I had an infant son, a husband, and two other kids that needed me and a career that was setting off with a new promotion?  Didn't you understand that I had desires, ambitions, and goals for my life and our precious family?  Didn't you care that I needed to see my parents and sister who live far away, or that my parents aren't getting any younger and traveling was becoming increasingly difficult for them?  Did it matter that I wanted to see my aunts, uncles, and cousins, but every time we tried to arrange a get together something fell apart and I wasn't up for it?   You certainly didn't care if I grieved all the holidays and events I missed with our family members; my spot empty at tables, church events, concerts, and ballgames.  It didn't phase you that I had a daughter who was growing up and needed her mama to take her shopping and teach her all the things that girls needed to know in entering adolescence.  You could have cared less that my sons needed a mama to be strong and hearty for their rowdy play, taking them to swimming lessons and cheering them on at sporting events.  What is it to you that my oldest barely remembers a healthy mom or that the other two only remember having a mom in pain and struggling to get through the day. 

Every time I thought I was finally on top of the disease and heading in the right direction, you came back with a vengeance in a relapse or one of your buddies reared their ugly head in my body.   After five long years of clearing you and your friends out, I was finally in remission, but the damage was so widespread that my body was still trying to recover years of abuse, and I was forced to face the reality that some of the damage may never be reversed.  You gave me five years of heart-aching battles, enduring moments when I thought I was in a never-ending nightmare.  I clung hard to a glimmer of hope that some day I would be set free from your torment.  When it seemed like the nightmare might finally be over, I discovered that your friend mold didn't care if I was in remission and wanted to keep the party going so he invited his best friends histamine and the "bad guys" that like to invade intestinal tracts to stick around and join in on the fun.    Even though my energy is returning and I have opportunities to get out of the house more often to participate in family events, we must continue to bear the burden of your thumbprint that has indefinitely marked our lives.

Oh, how I loath you, the worst of all enemies, the evilest of foes.  You have managed to baffle most doctors and medical practitioners as you bring down countless unknown victims in your web of horrors.  You are one of the greatest epidemics of our time, yet the reality of your loathsome presence is the biggest mystery and one of the greatest controversial scandals our world faces at this moment. The medical community and the CDC has tried to write off your existence as a myth, giving many little to no access to medical care or insurance coverage.  You are a thief who robs people of their health, sanity, physical well-being, financial stability, family, security, home, and their hope.  You are one of the greatest forces of evil that has been brought on by a fallen sinful world.

You may have thought you could bring down whoever was overcome by your powerful grasp of sickness, lies, and denial; however, you have underestimated the faith and strength of your many victims.  You thought that you won; but, guess what, God wins!  You underestimated the spirit of God, His healing power, hope, and empathy that is stronger than the weakest of bodies.  You miscalculated the power of prayer, community, and the church.  You sold short the determination of a mind that won't give up no matter what.  You have knocked me down time and again, but not once did I bow down to you or give up!  You couldn't fathom that one day I would say that I didn't regret what I have been through because of the good that came out of it.

My relationship with God is much stronger than it ever would have been, and I have a platform to share my faith in a much more powerful way than if I was never ill.  I have had the honor to not only suffer along with Christ, but empathize and suffer with my brothers and sisters who have also been marred by your evil grasp. My marriage is ten times stronger than it ever was before Lyme, and my husband and I love each other deeper than we could imagine.  My children are much more compassionate and understanding than if I would never have been sick.  My kids have told me that although it has been very hard to see me suffer, how thankful they are knowing that when they come home from school they are reassured I am always there.  My teenager daughter is one of my closest friends.  We rarely argue, and she is very devoted and fiercely protective of me.   My two sons joyfully help, pray, and serve when they see I am weak and hurting. I now enjoy cleaning and serving my family even when I am experiencing pain and weakness because I feel so blessed to be capable of doing it. I am more bold and confident than ever before.  I rarely worry about what others think of me, and my joy comes from a wellspring of hope and love that only a heavenly Creator can provide.  I appreciate all that was taken granted before your arrival.  Laughing is sweeter.  Moments with my are family more fulfilling.

When I stop and think about it, I have countless blessings that way outnumber the grief, heartache, and losses that you brought into our lives.  Although some in my circle may have questioned or criticized me and others exited my life because they were too busy or didn't know how to handle it, I have a greater and stronger network of friends and family than ever before.  I have met some of the most amazing people that I would have never known if it wasn't for my battle with chronic Lyme.  I have found strength, fight, and joy in places I never knew existed.   I have a renewed warrior spirit, and once I have my mind set on something, anyone or anything that tries to stop me better watch out!  So, don't think for a second that you get the upper hand.  With God. the church, an amazing medical team, and my family and friends on my side, you don't have a chance buddy!  You can gladly leave now and find someone else torment because I am done with you and have come out the better person because of it.  Have a nice day and don't let the door hit you on the way out!

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JOYFUL TREASURES:  God Wins!

Psalm 44:5 "Through you we will push back our adversaries; through your name we will trample down those who rise up against us."

When we face seemingly impossible situations, let us never forget the big picture.  The "future weight of glory" far outweighs our present sufferings.  I have read the book, and I can testify that in the end, God wins.  Let us stand firm together to achieve victory!

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For more information about my personal testimony and Lyme disease, you can visit these other blog posts:

About Chronic Lyme:  http://dzehm.blogspot.com/2012/12/chronic-lyme-disease.html

                                  https://dzehm.blogspot.com/2015/03/the-voices-of-lyme-voice-of-suffering.html
                    
                               https://dzehm.blogspot.com/2015/03/the-voices-of-lyme-voice-of-suffering-2.html

My Story:      http://dzehm.blogspot.com/2012/11/enduring-winter-my-battle-with-lyme.html

                       https://dzehm.blogspot.com/2015/07/the-good-fight-my-lyme-relapse.html

                       https://dzehm.blogspot.com/2016/09/the-lyme-labyrinth-crushed-spirit.html                    
                       https://dzehm.blogspot.com/2017/01/out-of-labyrinth-part-1-healing-through.html                  
                      https://dzehm.blogspot.com/2017/01/out-of-labyrinth-part-2-lessons-ive.html 

Nancy's Story:  http://dzehm.blogspot.com/2014/10/the-voices-of-lyme-voice-of-hope-nancys.html

Logan's Story:  http://dzehm.blogspot.com/2014/12/the-voices-of-lyme-voice-of-youth.html

Sally's Story:  http://dzehm.blogspot.com/2015/02/the-voices-of-lyme-voice-of-battle.html

Glimpses Into Chronic Illness: My Trip to the DMV

Last summer, my teenage daughter was going in to take her driver's test for her license.  I noticed that my license was up for renewal so I decided to go with her and renew my license while we were there. Our family friend and mentor, Ron, came along with both of us for moral support.  I was a little nervous about going to the DMV because I have a rare condition from CIRS (Chronic Inflammatory Response Syndrome) and history of Chronic Lyme that causes hypersensitivity around florescent lights, WiFi, and other electromagnetic frequencies which makes balance and mobility more difficult in public places.  We went armed with my wheelchair, headache visor to block out the lights, and a pair of sunglasses.

While my daughter was off with the driving instructor, I worked on my paperwork for renewal.  The lady at the counter was very kind and accommodating.  I got all of my paperwork in and was able to stay in the wheelchair for the pictures.  Everything went smoothly until I wheeled myself up to pay, and the clerk asked me why I was in a wheelchair. I answered all of her questions about my condition and explained to her that I am not always in a wheelchair but I get weakness in my legs and sometimes need to use it in public places.  She told me that it was their policy that individuals with impairments need to be evaluated by an MD and then have the state medical review team review the evaluation for license approval.  I was disappointed but figured they were just doing their job.  Afterwards, we chuckled over the fact my teenager passed her exam but I didn't have such luck.

I was not looking forward to going back to explain myself at the DMV again and put it off until I decided I better get in and get it over with.  I scheduled an appointment with my primary doctor, a wonderful woman who knows me well and has supported me throughout my health struggles over the years.  At the appointment, I passed the evaluation with flying colors as I have no cognitive loss or other impairments that would affect my judgement and ability to drive.  I wasn't ready to give up this aspect of my independence since I have already had so many other losses with being chronically ill. 

After turning in my paperwork to the state medical review, I spoke to a woman on the phone who said that they processed everything, and based on my evaluation, they approved my license renewal.  I was good to go, so Ron came with me to go back and complete the paperwork for a new license.  At that time, we realized my wheelchair was locked up in my daughter's vehicle at the high school so we figured I could use my cane and hang on to Ron's arm.  When we got there, I discovered that I forgot my headache visor, and I was going to have to put up with the bright lights and do my best.  At the DMV, Ron went to the desk and got the paperwork for me.  Because of my balance disorder it would be too difficult for me to stand in line.  They were accommodating again with the pictures and let me sit to wait for my turn.  The second experience was a little more daunting without my wheelchair or visor, but I was equipped with a small binder of Bible verses that encouraged me as I meditated on them.

Once again, it was time to pay, and Ron went up and asked if I could sit while processing my debit card.  The woman said, "No she can't."  Then she called across the room, "What is going on? Why can't you stand?"  At that moment, everyone in the room seemed to be staring at me, and I would have like to have been swallowed up and hide myself from humiliation. I tightened my grip on my Bible verses, smiled at the woman, and said, "It's OK.  I have all the documentation and approval needed to get my license."  The woman requested to see my documentation and said she needed to make a phone call.  While waiting, I took a deep breath and continued to mediate on my verses while praying silently for the strength to get through this ordeal.  I would need to choose my words carefully.

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Proverbs 15:1 "A gentle answer turns away wrath, but a harsh word stirs up anger."

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After making her phone call, she came up to where I was sitting and told me that she did get approval from the state to renew my license but still wasn't convinced that she should give it to me.  She said that if my "husband" was there to help me, how can she be sure that I am capable of getting in and out of a vehicle on my own.  At that moment, I could have cowered in defeat and walked away or I could have have expressed my indignation with her for making a scene in front of everyone, but I knew that neither of these responses would have positive outcomes.  Though she could have saved a scene in how she approached the situation, it was her job to assure the safety of other drivers out on the road.   I honestly wouldn't want my newly licensed teenager driver out on the road with someone who might black out behind the wheel or have cognitive issues that would make them unsafe to drive. I prayed silently, looked her in the eye, and calmly explained why it was difficult for me to be in a public place with strong florescent lights and how it affected my mobility.  I kept it short and to the point but was gracious and friendly at the same time.  She did finally agree to process my license and said my "husband" could bring me the paperwork so that I would only need to stand briefly when I signed off my debit card.

What an embarrassing experience, but I walked out of that place with my head held high feeling like I just finished the marathon of my life.  It was a huge victory for me!  Ron and I both had a long laugh over the references to my "husband" since he is closer to my dad's age, and we were ready to "high five" it as we got in the car to head back home.  God is good in all situations and I was very thankful for His peace and presence in dealing with this daunting situation.  Such experiences with my chronic illness have taught me to take nothing for granted!

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JOYFUL TREASURES:  Laughter is the Best Medicine!

Job 8:21 "He will yet fill your mouth with laughter and your lips with shouts of joy."

When we feel defeated by situations out of our control, sometimes the best response is to stop and laugh--a healing remedy in our grief.  Chronic illnesses can rob us of so much including our joy.  There were times where I did forget to laugh, and supernatural joy is one aspect of my life that the Lord has restored in my healing process.  Our family friend and mentor, Ron Mosca, is one of the most gracious and happy people we know.  He has brought a lot of joy into our family during some dark times when my husband and children watched me fighting for my life.  Friendship and laughter is a gift we greatly treasure!

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**This article is NOT intended to discredit the DMV.  I am thankful for their role in keeping our streets safe.  My intention here is to demonstrate how we can approach uncomfortable and unpleasant situations with grace and dignity
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For more information about Chronic Conditions and Invisible Disabilities, you can read some of my other blog posts:

https://puresimplewholeliving.blogspot.com/2018/02/simply-living-when-life-is-anything-but.html

https://puresimplewholeliving.blogspot.com/2018/03/glimpses-into-chronic-illness-why-cant.html

https://puresimplewholeliving.blogspot.com/2018/04/glimpses-into-chronic-illness-but-you.html

https://dzehm.blogspot.com/2017/01/out-of-labyrinth-part-1-healing-through.html

https://dzehm.blogspot.com/2017/01/out-of-labyrinth-part-2-lessons-ive.html

https://dzehm.blogspot.com/2015/10/care-in-our-culture-part-1-invisible.html

https://dzehm.blogspot.com/2016/02/care-in-our-culture-part-two-invisible.html

http://dzehm.blogspot.com/2014/08/kellys-hope-part-three-bridging-gap.html