Glimpse Into Chronic Illness: Life on the Sidelines

Chronic Illness and invisible disabilities create a battleground for unseen heroes and unorthodox victors. Age, wealth, and social status mean very little when it comes to facing these conditions because disease has a way of leveling the playing field.  In my Lyme disease and CIRS (Chronic Inflammatory Response Syndrome) social network, I have encountered a variety of individuals from different walks of life. Some are young and beautiful individuals who outwardly appear to have everything going for them, yet they are inwardly hurting, grieving, and feeling they have to face these challenges alone. Individuals with chronic conditions often have emotional trauma in coping with both physical and social losses--especially when they are forced to withdrawal from society as a result of enduring intense pain, weakness, neurological symptoms, and various sensitivities to light, noise, chemicals, and food.

No matter how you try to sugarcoat it, experiencing life on the sidelines is just plain hard.   It is a daunting and grievous process for anyone who has been through it, especially young moms and dads who were forced to give up their career, a spouse, or a close family member/friend over the ordeal. As you experience social withdrawal, grief can sneak up on you in unexpected ways.  You go on Facebook and other forms of social media because that is the only way to stay connected to other people.  Some days you find yourself sad or envious when you observe pictures of your friends, family, and acquaintances living a "normal" life.  You see smiling faces of people going on vacation, enjoying family events, and celebrating holidays, while you find getting out of bed to be an ordeal.  Then, you feel guilty for your negative emotions and berate yourself for not accepting your isolation and being happy for other people who have never experienced living on the sidelines or missed out on "normal" activities.

The grief that a person experiences with social withdrawal can infiltrate every aspect of your relationships, whether it is with your own family or distant relatives, friends, and members of your church.  You see the look of disappointment on your child's face when you miss yet another concert, play, or sporting event, and you feel terrible for letting them down.  You sigh as your entire family leaves for church, a birthday party, or a wedding and you can't make it.  You plan a trip to see your extended family and have to cancel yet again because you are having another flare up.  You find out family members are in town for a reunion or party but don't think to stop by afterwards since you are too sick to leave the house.  You finally are able to get out for a family dinner or community event but have to brace yourself for what to say when you are unable to partake in the meal and have to bring foods that you know are safe to eat.  You worry about what people might say to you, that they might judge or question you.  Maybe they will perceive you are on the next "fad" diet or misunderstand your reasoning for the food choices you are forced to make because you are either allergic or unable to tolerate anything else.  You have to prepare yourself for any potential embarrassment if you might react to someone's perfume, air freshener, cigarette smoke, or cleaning chemicals they might  be using at the event.  You wonder how you should discreetly handle the situation, especially when you are in someone else's home and you don't want to upset them or feel like you are a burden.  Family, friends, and church members may become awkward and uncomfortable around you because they just don't know what to say.  If you are in a wheelchair or need devices for mobility, you may encounter stares or uncomfortable glances from people who are startled to see a young mom with physical impairments.  You may be out in public and observe someone purposely moving to the other entrance to avoid you.  You may avoid certain situations to protect yourself from rejection and then feel guilty for your feelings.

These are all very real experiences that I or someone I know who has a chronic condition/invisible disability have gone through at some point.  When we grieve these losses, we can easily be pulled into a downward spiral of bitterness and depression, and the "pull yourself up by the bootstrap" mentality becomes a false perception that will eventually let us down.  What do we do with our grief, and how do we handle our fears, worries, and disappointments?  Christ's redeeming power is the only true antidote that can lift us out of such despair.  Christ knows more than anyone else what it is like to be isolated from society when He endured the most horrific death imaginable while experiencing complete separation from His Father.  He was tortured and humiliated so that He could share in our loneliness, grief, and sadness.  Christ wants us to trust Him to carry our burdens so that we can we truly heal.  Healing begins in layers of forgiveness and letting go of our fears/worries of what others think.   Living on the sidelines is is a gut-wrenching experience that allows the Lord to change our hearts as we renew our perspective to appreciate what we have.  It forces us to take NOTHING for granted.

In 2015, I experienced unimaginable suffering and grief while going through a major relapse that forced to be bedridden for a time.  It felt like I was starting over and I completely lost any ground gained from five years of fighting chronic Lyme disease.  I wanted my life back again!  In my recovery process, I asked my friends and family to pray that I would be completely back to "normal" by May of 2018 so that I could attend my daughter's high school graduation without any problems.  In those 2 1/2 years, I prayed for God to help me as I painstakingly rehabilitated my body through series of exercises, alternative therapies, and diet modifications.  I didn't give up and eventually had real results when I started taking a few risks in getting back to "normal" activities.    For the first time in several years, I could make it through concerts and other school events without feeling like I was going to pass out the entire time.  My teenage daughter took me shopping for the first time in over six years, and we celebrated the accomplishment with a selfie!  I was able to attend church, movies, and family events.   I even took a walk around the neighborhood while pushing my wheelchair for support. I shared some of these experiences on social media and received much encouragement and positive feedback from others.  I felt like I could accomplish anything with God's help and the encouragement and support of my friends and family!

Although my prayer request wasn't answered in the way I hoped, I did make it to my daughter's graduation and was able to relax and enjoy myself.  On that momentous occasion, my heart was full of happiness and gratitude the entire time!  A couple of weeks later, we planned a graduation party which became a reunion with friends and family.  It was a very joyful event for all of us.  I made it to both the graduation and her party without a problem, and my daughter and I had an incredible summer making up for lost time together before she was ready to head off to college.  We spent as much time as possible together working on projects at the house, going on rides in our family vehicle, and taking shopping trips.  We even took a 500 mile trip together to see some of our relatives and visited places from my childhood. This summer we transformed how we viewed our situation.  Instead feeling sorry for ourselves and fretting over my continued impairments, we used that time to enjoy every moment that was redeemed for God's glory.  I felt truly blessed to be able to attend church and some family events, and I found myself experiencing confidence in ways I have never had before.

 I am a believer that the Lord doesn't waste our suffering because it has a purpose, and I try to use my own losses to empathize and encourage others who are grieving.  Despite all of the grief and trauma that sideline living has brought me, I can honestly say that I have a tremendous amount of happiness in experiencing these precious moments with my family.  I truly hope that my story will inspire others to defy the odds and take risks.  Happiness may seem impossible at the moment, and we may not see the light in our circumstances, but there is always hope around the bend.  I can testify that God can redeem our despairing experiences for a greater purpose.  We may need to modify our goals and dreams to fit God's plan for us, but He will work it out in His own way and timing.   Never give up no matter what!

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JOYFUL TREASURES:  Plan a Date Night!

1 Corinthians 13:4-8, "Love Never Fails."

As I began to come out of living in the sidelines marred by chronic illness, I gained more appreciation for activities I once took for granted.  I especially treasure taking date nights out with my husband who has  been committed to stay by my side and navigate our relationship through insurmountable challenges.  It seems like our bond of love defies the odds and grows stronger each year.  We typically dine out once a year for our anniversary, and our favorite dates are movie nights together. Our date nights are a simple reminder of our early years as a couple, and it feels so good get out and enjoy time alone together!

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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/2018/05/glimpses-into-chronic-illness-letter-to.html

https://puresimplewholeliving.blogspot.com/2018/05/glimpses-into-chronic-illness-my-trip.html

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

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.

_______________________________

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

_______________________________

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
.  
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

Glimpses Into Chronic Illness: But You Don't Look Sick!

A while back, I was browsing some photos on Facebook in which someone took random photos of people at Walmart in unusual situations to poke fun at them.  On the post, I saw a photo of a woman at a fast food restaurant sitting in a chair while waiting in line to make her order.  Underneath the photo, people were making very rude and judgmental remarks about her weight and about how lazy she must be.  I was very disheartened by these remarks because I guessed that there was more going on there than meets the eye and because, if I was in her situation, I would have had to do the same thing.

When I discovered a tick bite on my leg while visiting family in Northern Wisconsin Labor Day weekend 2009, I didn't think much of it and never would have dreamed that it would change my life so dramatically.  I was pregnant at the time so when I started having symptoms, I assumed they were pregnancy related.  About a month later, I was at a work training where we had to stand in line and do these silly demonstrations.  I remember having a strange sensation in my legs like the floor was swaying and I felt like my legs couldn't hold me up.  I wondered if I going crazy and thought to myself that this was the most bizarre pregnancy I have ever had.  From then on, I was never the same, and I've had problems with mobility and balance in my legs ever since.  I had no idea why I was having so much trouble walking.  I thought I must be losing my mind, and I was afraid that others might find out.  I became an expert at hiding my vertigo and balance trouble.  When I was at work, I would nonchalantly hold onto the wall, a chair, or whatever I could find to steady myself.  I pasted on a smile and faked my way through it.  Faking and ignoring my body worked for a while; however, once my symptoms became worse it was becoming increasingly difficult to hide, especially when I started having falls.   I had to make a tough decision for the safety of myself and the seniors I was serving at the care facility.   I knew I had to step down from my position and take a leave of absence.  It was one of the hardest things I ever had to do.  I was humiliated with this moment of defeat and felt like a failure.   At that time, I attempted to hide my impairments in public by using my son's baby stroller for support and balance.  Eventually, I was diagnosed with Chronic Lyme disease, a common invisible illness.  Unfortunately, treating the disease with antibiotics caused an adverse reaction that actually made my symptoms worse instead of better.  Once my son was becoming too big for a stroller and I was too weak to push it, I switched to a cane and later on had to get a wheelchair to use for long distances and mobility in public places.  The blessing of using these devices, especially the wheelchair, was that they gave me freedom to be able to face my dependence and be more open about my illness with others.

People with invisible illnesses and disabilities often call the impairment their "secret identity" or their "double life."  They will describe their ongoing battle with how others perceive their condition.  As they isolate themselves to avoid these scenarios, their social lives will falter and fade into the cracks. In my support network with individuals who have chronic conditions, the number one complaint I hear is when people tell them they look great or they do not appear sick.  They often will perceive that the person does not believe them or is minimizing their pain. When people tell me how great I look, I take it as a compliment.  I usually smile and say thank you, or I might add "I wish I felt as good as I looked."  

Other individuals in my support network have shared frustrations in how to respond to rude and insensitive comments from individuals who do not seem to believe they have an impairment.  For example, individuals with invisible impairments are often criticized and accused of being lazy or deceptive if they use a handicapped parking spot.  They may ask a spouse or someone else go to the store for them in order to avoid the scorn and anger of uninformed members of the community.
Individuals with chronic conditions will also struggle with how to respond to questions about how they are feeling.  They will often give a dishonest answer because they may question the person's sincerity, they may see their pain and impairment as a sign of weakness, or they may not want to talk about it.   

Just because someone is struggling with how to communicate about their impairment does not mean you shouldn't ask them questions or show that you care.  It is refreshing for them to see your sincere demonstration of kindness and consideration.  I bring up these issues, not because you should worry about what to say to someone with health impairments, but to offer insight into their lives.  We are more equipped to show respect and compassion to others when we are aware of what is not visible to the eye.  You may have never experienced going through a chronic condition or having an invisible illness/disability.   It might be more challenging to have empathy for others in this situation.  I realize that it can be very hard to understand unless you've been through it yourself or with a loved one, but there are ways you can help.  Small things like making a phone call or sending a card in the mail to show them you care will make a difference.   If you want to uplift someone who is struggling, take the time to pray with them over the phone or in person.  You can also help out by offering to come over for a couple hours and clean/do their laundry, pick something up for them at the store, or take their kids out for an afternoon of fun.  I hope and pray that more people will take time to learn about the pain and struggles of others so that they can have compassion and empathy for them.

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JOYFUL TREASURES:  The Truth will Set You Free!

John 8:32 "and you will know the truth, and the truth will set you free."

There are two kinds of courage in dealing with chronic illness.  There is incomprehensible strength in bravely pushing through the pain and bearing with it; however, I have witnessed a new dimension to courage when that person openly admits their need for help.  God will meet us where we are at to comfort us in our sorrow over our losses.  When we finally are able to get past our grief and embarrassment with our impairments, we get down to the truth and that truth will set us free as we become vessels of God's grace in our weakness.   

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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://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

Glimpses Into Chronic Illness: Why Can't I Get Better?

Life can throw challenges our way in which we all experiences personal battles, but what happens when you feel indefinitely wedged in a troubling situation?  People who have a chronic illness or invisible disability often feel stuck in their debilitating symptoms as well as their feelings of guilt and grief over the lack of improvement.  When you come down with a cold or a virus, you may feel rotten for a few days or even a week.  You may go to the doctor for a prescription or take something to ease your symptoms until the virus takes its course, and then you move on.  When you struggle with a chronic condition, it is like being stuck in that place of feeling miserable for months and sometimes years at a time. Your specific condition may not have a cure or effective treatment.  Other people may not understand why you can't take a pill or something to get better because they are uninformed of the nature of your specific condition.  

When people ask me about my condition, I'm not always sure what to say because it is not the result of one specific disease or illness but complex underlying layers of infections, pathogens, and autoimmune triggers. I have had multiple diagnoses, and sometimes I am focusing on a certain aspect of treating my condition at that time.  I do appreciate those who have taken the time to ask and truly care and want to understand my world.  About every 3-6 months someone approaches me about a product or supplement that they believe I should consider using to heal my condition.  I try to be open to suggestions and enjoy hearing success stories about how people have improved their health with a product or treatment.  I encourage people to take charge of their wellness and be proactive with what works for them.  Unfortunately, there is not a "one size fits all" treatment, drug, or therapy that works for everyone.  This is especially true with conditions like Lyme disease, Mast Cell Activation Syndrome, and Chronic Inflammatory Response Syndrome (CIRS) where each person's tolerance to therapies can vastly differ.

When someone approaches me about their product, I take the time to hear them out and listen to their story.  I appreciate the fact that they cared enough to want to help.  Living with a chronic illness is a very lonely place to be because most aren't able to enter this world of navigating life through a fragmented lens of pain and struggle that impairs daily functioning.  Having those brief interactions with others in my church and social network provides a way to connect with them and to give them a glimpse into my life.  I am gracious to those individuals and thank them for taking the time to reach out to me.   Then, I will politely explain that I don't take anything without very slow/careful consideration and only after running it by my practitioner who tests everything I take for compatibility with my fragile system.   Occasionally, the individual will tell me that they don't understand how detoxing or using a certain vitamin or supplement can be unsafe because they are "natural."  "Catch all" supplements or protocols can be great for many people who are trying to take charge of their health, but can be potentially dangerous for someone like me.     After hearing that person out, I usually explain that I have multiple allergies and sensitivities from a chronic inflammatory condition.  Because I am genetically unable to detoxify specific substances on my own, I must be extremely cautious with what I put in my body.    Every treatment that I use is very deliberated and specific to my individual condition which has been tested through a series of labs and bio-resonance testing in the clinic.  Treating these complex layers is a very slow and painstakingly deliberate process that can be overwhelming to sort through, and I will set boundaries with those who are more persistent in encouraging me to use their products.

Because the primary symptom of my condition has been a balance disorder with chronic vertigo, someone periodically either messages me or posts on my Facebook page an article about a Colorado doctor who found a "cure" for vertigo with her simple fix.  Wow, that is amazing, right!  This article is a little misleading because there are several types of vertigo and the article addresses the most common form of vertigo, Benign Paroxysmal Positional Vertigo (BBPV).  Unfortunately, my vertigo is a result of damage to the balance center of the brain and nerve tissue which is common for people with MS, chronic neurological Lyme, and mold toxicity from CIRS.  For me, vertigo is my body's way of telling me that it is exposed to something it doesn't like.  Some call this symptom being the "canary in the coal mine."  When I get these messages/posts, I usually thank the person and leave it at that.  If it is someone I'm close to, I will take the time to explain why this treatment would not cure my vertigo.

When these situations occur, I perceive it as the person caring about me and wanting to help.  I wish there was a cure or easy fix but life often doesn't work that way.  The day to day battle is weary to the body and the soul; however, I am a fighter and I never give up my pursuit for wellness.  An amazingly compassionate and supportive medical team, the support of my network of friends and family, and my close relationship with God has provided an anchor for me to stay strong and keep on the fight!  I believe that every aspect of life has a purpose that will not be wasted, and I am determined to use my experiences to reach out to others on social media and with my blog.  It is a hard place to be, yet filled with momentary blessings to be used for a greater purpose.

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JOYFUL TREASURES:  Joy is a Daily Choice!

James 1:2-3 "Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness."

When we are hurting and battle weary, we can find hope in God's promises.  Sadness and sorrow is for just a moment in comparison to the eternal reward we will one day experience.  Joy doesn't come easily but IS possible by God's grace as we make a daily choice to believe and trust in his word.  I pray my hurting brothers and sisters will be able to glimpse out of the fog of chronic illness into the light of eternal glory and find joy in the loving presence of the Prince of Peace!

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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://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

Simply Living When Life is Anything but Simple

Last March, I enthusiastically started this blog with a desire to share some of the tidbits I learned about whole living in my pursuit for wellness.  I couldn't wait to divulge some of the cooking tips and recipes I picked up while experimenting with the GAPS (Gut and Psychology Syndrome) diet along with other nuggets of wisdom in my quest for spreading joy in the simplicity of life.  I was in the process of learning to make homemade GAPS foods like almond bread, almond milk, homemade yogurt, and fermenting my own vegetables.  In doing so, I started experimenting with foods I hadn't touched in years, and I even tried to make my own homemade salsa!  I was having fun with this new adventure until the foods I introduced caused an inflammatory response that set me back even farther with food and chemical intolerances, and I was forced to stop fermenting and making other GAPS foods all together.

About a year ago, my primary doctor sat me down and told me that she felt my symptoms pointed to a debilitating condition known as Chronic Inflammatory Response Syndrome or CIRS, a common dual diagnosis with Chronic Lyme Disease.  We were hesitant in proceeding with labs and treatment, especially since I was making progress with my other therapies.  We had seen an overall improvement in my condition.  Unfortunately, I struggled with moderating my improvements and therefore went overboard by taking on too much.  I was thrilled to have renewed energy I had not experienced in a very long time, and I couldn't seem to slow down.   Over the summer and fall seasons, I  became exhausted trying to keep up with my husband, his business, our three active children, and a new puppy; not to mention all the supplements, treatments, and other therapies I was doing.

It was just before the holidays.  Two nights before Thanksgiving, we were planning a trip to see my family down south, and I was up half the night going through an insurance audit that needed to be done before we left.  The next morning, I woke up feeling exhausted with a bloated stomach, swollen ankles, and aching all over.  I looked into the mirror and observed the reality that my previous Lyme disease battle in conjunction with chronic stress and sleep deprivation had worked its way across my weary face.  I felt like I was falling apart.  Hesitant to travel with these new flareups, I called with my alternative practitioner for advice.  He was the one who took extra time to figure out my complicated situation in order to help me overcome many of the damaging effects of Lyme disease, and he was the one who had discovered my histamine intolerance and methylation disorder that has impaired my body's ability to tolerate many foods and substances.  My practitioner expressed concern that my histamine was getting out of hand again, and I was going back into an autoimmune reaction.  We had a tough decision to make about whether or not we should still travel to Kansas to see my folks.  We decided to go for it despite these concerns.    As hard as the trip was on my body, I cherished invaluable time with my family.  I needed to be back to my childhood home for a few days!

After the holidays, my primary doctor went through some labs with me, and she diagnosed me with a painful and relentless intestinal disorder called SIBO (Small Intestine Bacteria Overgrowth).  My labs also indicated that I was experiencing malabsorption of nutrients from the chronic overgrowth of bacteria as well as elevated cortisone levels in my bloodstream.  We discussed concerning red flags from my hormone panel, nutritional profile, and other labs.  She informed me that my body was going through adrenal fatigue from sleep deprivation and high stress, and I was going to end up relapsing back to where I started if I didn't take better care of myself.  I had to make some lifestyle changes.  It was NOT negotiable!  What happened to the simplicity I hoped to achieve?

A while back, I looked at this untouched blog that I put aside to "simplify" my life, and I had to laugh.  Living Simply?  Really?  My life had become anything BUT simple.  My joy seemed to be slipping through my fingertips like an evasive thought.  Don't get me wrong, I have much to be thankful for.  I have a wonderful husband who loves and cherishes me, 3 incredible beautiful children, the sweetest dog ever, and a huge support system of family, friends, and church members to cheer me on!!   I have a myriad of ideas, ambitions, and hobbies that I would love to pursue, and my relationship with God has been my cornerstone for steadfastness.   On the flip side, I have a chronic condition that wears me down and holds me back from all that I desire to do.  I guess my body can't keep up with my heart and my mind.  My life seems far from simple as  I vacillate between valiant attempts to achieve "super" wife and "super" mom status and falling over exhausted, held up in bed for days at a time recovering from my "super" efforts.  I tell myself, "I just need to get through this week", "the summer craziness", "the fall rush for my husband's business", "the holidays", "basketball and wrestling season", "my son's birthday party", and "seeing my daughter through to graduation and college."  "Keep moving forward."  "You got this."  "You can sleep tomorrow."  The fight in me keeps kicking though it sometimes kicks me over.  I may fall down and I may be bone weary, but I just keep getting back up and pressing on; however, I need to ask myself at what cost.

Since my ongoing health struggles don't quite match up the plans I had for this blog, I'm asking myself where I should go from here.  Blogs about healthy eating and natural whole living are probably a dime a dozen.  My other blog, "Broken Places", which has been my labor of love for almost 7 years, has touched over 50,000 lives with stories of God's sovereignty in suffering.   I plan on continuing my quest to inspire others with the message of redemption amidst hardship and sorrow through "Broken Places", and yet I also long to offer gratitude and encouragement that transforms the simple aspects of life with "Joyful Mama." How do I do that?

 I think people have been inspired by my other blog because they are able to connect with its raw expression of affliction mixed with hope.  Maybe my pursuit of simple whole living involves sharing my struggles and triumphs in battling the day to day stuff.  Maybe people simply are looking for the tangible truth, something they can relate to.   I need to be real with my readers because life ISN'T simple and it sometimes really stinks; however, I am going to TRY to make it simpler and I am going to keep pursuing joy in my daily walk.

This article is for my warrior friends who are battling this crazy life that is anything BUT simple.  Let's press on and be committed to dispose the extra garbage in our lives and strive to find restoration in the simple gifts our creator designed for our personal delight.  As we pursue the simplicity of ultimate truth and link arms to withstand our daily struggles, we will surely succeed in achieving divine victory!

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JOYFUL TREASURES:  Taking Victory!

1 John 5:4 "For everyone who has been born of God overcomes the world.  And this is the victory that has overcome the world--our faith."

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*For more information about living with invisible disabilities you can visit my blog, Broken Places:

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

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

Reconnecting with Nature

Has it really been more than four months since I last wrote anything for my blog?  I needed to re-prioritize my time over the summer.  My husband's franchise was busier than ever before, and we had house guests coming and going most of the summer.  It seemed like there were not enough hours in the day.  With going on too many nights with not enough sleep, I knew something had to go so I decided to take a vacation from writing.  Instead, I tried to get outside every spare moment I could.

My favorite summer past times are working out in the garden and sitting outside with a journal and a good book.  We spend too much of our time indoors with our busy lives, smart phones, iPads, and lap tops, that we forget about the simple joy of reconnecting with our glorious natural surroundings.  With increased exposure to modern technology and less time outdoors, no wonder many of us are battling through health struggles!

I've read numerous articles and posts about the value in connecting to the earth by getting down and dirty with all that was created for our pleasure.  How often do we take the time to be amazed by the wonder of a hummingbird's flight, the glorious hues of a butterfly, or the magnificent design of a spider web among the perennials?  These treasures uplift the spirit and bring philosophical meaning to the mundane aspects of life.  Not to mention there are real measurable health benefits.  Our bodies need the Vitamin D from the sun which is known to help in disease prevention and stabilizing our emotions.

EARTHING

Five years ago, I was in a fairly intense battle with Lyme disease, my body going through a strong herxing reaction with detoxing mercury which resulted bizarre side effects, including extreme sensitivity to EMF's, severe vertigo, and other neurological symptoms.  My alternative practitioner suggested I try grounding to help offset some of my symptoms.  He told me to go outside barefoot and lay down in the grass as much as my body could tolerate.  Within a few days of trying this activity, I had reduced vertigo and tachycardia, and I was able to spend more time out of bed.  From that moment on, I was hooked! 

What is grounding and how does it work?  Grounding or earthing is simply going outside and putting your bare feet in the grass, dirt, or concrete.  Our bodies are made up of energy which becomes out of balance from the EMF's in our environment.  Pollutants and EMF's from our cell phones, computers, TV's, WiFi, and other electronic devices build up free radicals in our bodies.  The natural energy fields of the earth neutralizes these free radicals which restores our natural biorhythms resulting in decreased pain/inflammation, better sleep, improved mood, and numerous other benefits.  I have been earthing for years and love spending my summers barefoot.  By now, my neighbors are used to me hanging out in our yard with a blanket or towel and laying down on the grass.  It's truly a refreshing and joyful experience!

DEFENSE AGAINST TICKS

One of the concerns with being outside in the grass is the increased risk of coming in contact with disease-carrying ticks.   Those of us who have had Lyme and other vector-borne illnesses are more aware of the dangers of tick exposure and are often unable to tolerate chemicals found in insect repellents and pesticides.   It can be a challenge coming up with  natural solutions for this dilemma and still enjoy nature.  In the fall the deer ticks can especially become aggressive and problematic for us nature lovers.

 Here are some natural solutions recommended to me.  This is a basic recipe for a natural tick spray that you can use on yourself and/or your pets, which has been recommended by my naturopath practitioner:

Add 1 cup of water to a spray bottle, followed by 2 cups of distilled white vinegar.  Ticks hate the smell and taste of vinegar and will be repelled by this ingredient alone.  You can additionally add 20 drops of your favorite essential oil such as Eucalyptus, Peppermint, Citrus Oils, or Geranium Oil which give off crisp strong odors that will repel ticks.  After mixing the solution, you can spray it onto your clothing, skin, and hair before going outdoors and reapplying every four hours to keep ticks at bay.  For pets you can add two teaspoons of vegetable or almond oil that contain sulfur, another tick deterrent.  When you add lemon juice, citrus oil, or peppermint oil, this will also repel fleas.  You should spray them several times a day if they stay outdoors most of the day.

Another option is ordering specific herbs and essential oils recommended by the Buhner Protocol for tick prevention:

 Dr. Stephen Buhner recommends taking 1000 mg per day of the herb Astragalus throughout the year, increasing it to 3000 mg during tick season.  For a homemade tick repellent, Buhner recommends taking 1/2 teaspoon each of essential oils--Rhodendrom Tomentosum, Tagetes Minuta, Chameacy-paris Nootkatensis, Artemisa Absinthium, Myrica Gale, Juniperus Virginia, Eucalyptus Citriodora, and Oragnum Majorana.  Add the essential oils (4 tsp total) to 8 ounces pure grain alcohol at 995% alcohol or as close as you can get.  Blend well and store in a tightly capped brown bottle, keeping it out of the sun.  According to Buhner, these oils are available on the internet. 

I have to be very careful what natural supplements and products I use and therefor try to keep herbal remedies and essential oils to a minimum.  Instead, I have a bottle of 50% water and vinegar solution on hand to spray on my body whenever I go outside.  I will also sometimes take a shower and change my clothes after being out in the garden or tall grass just to be sure there are no ticks on me or my clothing.  I've read that keeping a lint roller handy to roll on your body/clothes is another good way to pick up any deer ticks which are about the size of a poppy seed and difficult to detect with the naked eye.

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JOYFUL TREASURES:  Outdoor Companions!

"Until one has loved an animal, a part of one's soul remains unawakened." - Antaole France

Introducing our new Cavapoo puppy, Oscar.  We decided to get a poodle breed for a low allergen family dog.  We wanted a therapy dog for myself and for our teenage daughter who desired to get a dog for her 18th birthday.  My husband selected this dog in particular because of his gentile docile nature.  He has a very calming effect on us and is a delight to be part of the family.  This year, I was finally able to get out and start walking.  It is a joyful experience to take our dog on neighborhood walks, using my wheelchair for balance.  Our dog loves exploring the neighborhood and sometimes he gets a free ride!  

Oscar and I also enjoy hanging out together in my garden, and I want to be sure he is safe from tick exposure.  For a natural tick repellent, my chiropractor recommends that I give him Petz Life Herbal Defense Powder, a natural alternative to the chewable tick repellents veterinarians often use.  The powder can be taken in in soft dog food twice daily for 5 days.  Repeat on a monthly basis.    The Herbal defense powder can be purchased online through Amazon and at some pet stores.  

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RESOURCES

For more details about the spiritual benefits of reconnecting with nature, you can read my blog:

https://dzehm.blogspot.com/2013/07/lessons-from-garden-tender-reflections.html

For more information about the harmful effects of electromagnetic frequencies and natural ways to live more fully in spite of their strong prevalence in everyday life:
https://puresimplewholeliving.blogspot.com/2017/05/electromagnetic-frequencies.html

To learn more about the benefits of grounding:

https://kimberlysnyder.com/blog/2014/01/16/invisible-benefits-grounding/

https://wellnessmama.com/5600/earthing-grounding/

http://www.chopra.com/articles/grounding-the-human-body-the-healing-benefits-of-earthing

https://grounded.com/what-is-earthing/

https://articles.mercola.com/sites/articles/archive/2015/11/21/grounding-effects.aspx

For more information on repelling ticks naturally:

https://commonsensehome.com/natural-tick-repellents/

https://www.mommypotamus.com/natural-tick-repellent-recipe/

For more information about the Buhner's protocol for Lyme and repelling ticks:
https://growsoeasyorganic.com/tag/stephen-buhner/

This is the natural tick defense we use for our dog:
https://www.amazon.com/PetzLife-TickZ-Biting-Insect-Control/dp/B0056EOR3G