My #InvisibleFight

“You’re looking pretty good today. How do you feel?” The response I often want to give is, “I feel like crap, but thanks for asking.” However I’ve come to realize that isn’t helpful to me or the person asking. It just shuts down communication, and I feel worse. I should be grateful that someone asked how I feel, even if it is just in passing.

If someone doesn’t suffer with an invisible chronic illness, it’s impossible for them to understand or comprehend the pain, struggle, and suffering we go through every day. Yet, we want them to understand, don’t we? Except for a few close friends and my husband who have walked alongside me with my invisible illnesses, most people don’t understand the numerous doctors appointments, pills and supplements, and traveling great distances for consults, second opinions, and skilled surgeons.

One of the most effective ways I do my #invisiblefight for the invisible illnesses I and my family have is through social media. It started simply by someone recommending to me a website called Rest Ministries (http://restministries.org), a website that ministers to the chronically ill. It has daily devotionals that speak to my struggles, informative articles, a chat room called “The Sunroom”, and specific groups that I joined to discuss specific illnesses or types of support. Eventually, I submitted several devotionals and articles to Lisa Copen, the founder, and she graciously accepted them for inclusion on the website. At Rest Ministries, I find great camaraderie, empathy, and understanding from fellow writers and others fighting invisible illnesses here.

The three invisible illnesses I have are ulcerative colitis, lyme disease, and endometriosis. Fortunately, my ulcerative colitis has been in remission most of the 33 years I’ve had it by taking daily oral medication. However, my two grown children both have Crohn’s disease, one diagnosed at age 8 and one at age 20, and they have had significant flares and changes in medications over the years. By God’s grace and advancements in research and medication options for Crohn’s patients, they are both in remission. My “go-to” website for information on these illnesses is the Crohn’s and Colitis Foundation of America (http://ccfa.org). This website has webinars with leading doctors and researchers in the field, a separate web area just for teens to talk with one another, the latest information on medications and treatment options, stories of those with Crohn’s or colitis who are making a difference, and many ways to get involved in supporting and promoting these diseases.

Due to the controversy over whether chronic lyme disease is a reality, I found it difficult at first to find reliable information, but through meeting hundreds of patients and being treated by two great Lyme Literate medical doctors (LLMDs), I have found reliable websites that offer names of LLMDs, effective treatment of lyme and its co-infections, and ways to advocate and support legislation for better research and testing. Just a few of those sites are ILADS Lyme Society (www.iliads.org), Lyme Disease Network (www.lyme.net), and the LDA–Lyme Disease Association (www.lymediseaseassociation.org).

Of the three invisible illnesses I have, finding current and reliable information on the internet, or anywhere else, for endometriosis has been the most difficult. It’s not considered a “big deal” in the hierarchy of chronic diseases–a few bad cramps, some severe bleeding occasionally, a few “minor” surgeries, and you should be up and running. If all else fails, most gynecological surgeons recommend a hysterectomy.

I’ve had endo for 27 years, had five laparoscopies, a hysterectomy, worked with a pelvic floor physical therapist, and tried numerous medications, and at age 59, still have pelvic pain. After my most recent laparoscopy in April 2015, I got serious about researching this disease and found that there are only a few surgeons in the U.S. who are endometriosis excision specialists. If you want to learn about endometriosis and find support from others who are experiencing debilitating symptoms, ask to join Nancy’s Nook Endometriosis Education & Discussion Group on Facebook. Two other great resources are the CEC–Center for Endometriosis Care (www.centerforendo.com) and the EFA–Endometriosis Foundation of America (www.endofound.org). Through these groups, I educated myself and am sending my medical records to three excision specialists with the hope of eradicating endo from my body for good.

Finding good resources of information from other people suffering from your same illness, discussion groups on Facebook, Twitter, or websites, or your own experience with good doctors can empower you and give you hope to keep up the #invisiblefight. And you can pass it on to others who are also fighting the #invisiblefight.

My ultimate weapon for my #invisiblefight is prayer and the strength that Jesus gives me when I don’t have the mental or physical strength to function. I know without a shadow of a doubt that God hears my cries when I lie awake at night wanting to sleep, but can’t. He knows my suffering because He suffered great physical pain, too. When no one else understands, He will never leave me nor forsake me. When I am unsure about a medication or treatment plan laid out before me, He gives me His wisdom that is way beyond my finite mind. He collects all of my tears in a bottle and gives me peace in the midst of the #invisiblefight.

But the greatest gift Jesus gives me in the midst of my invisible illnesses is joy. Joy in spite of the circumstances. Joy in His creation if I open my eyes and ears. Joy that He never sleeps and is always awake for a good cry or conversation. Joy when He uses my struggle to comfort and come alongside another who has the same illness. Joy that I can pray for others when I can’t do anything else. Joy that He is my greatest warrior in my #invisiblefight.

 

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Herxing — Another Weird Part of Lyme

Lyme-Disease wordleI promised you in my last post that I’d keep you updated on my second journey of battling Lyme disease. In my last post, I said I had debilitating fatigue, muscle aches/weakness, nausea, and some anxiety for about 3 days. Those symptoms are the Lyme disease reacting to the antibiotics, the disease fighting back against these invaders. This reaction is a positive sign that the antibiotics are working and is known as the Jarish-Herxheimer reaction. Commonly this name is abbreviated to herxheimer, “herxing,” or simply “herx.”

What is known about Lyme disease herxheimers are based heavily on the reactions seen in syphilis. This is due to the fact both diseases are caused by a bacteria known as a spirochete, the former being Treponema pallidum, the latter Borrelia burgdoferi (Bb). However the herxheimer reactions in Lyme disease are not identical to those seen in syphilis. Bet you never thought you’d see a discussion of syphilis with one on Lyme Disease!

A herxheimer occurs because the Bb bacteria, under attack from the antibiotics, start to break up and die, releasing toxins and other harmful debris as they do so. This, in turn, causes the body’s immune system to temporarily go into overdrive in order to cope with the abrupt deluge of toxins and debris.

A herxheimer can last from a few days to two weeks or more, depending on how disseminated the Bb bacteria is in the body. The greater the dissemination, generally the longer a Herxheimer will last. During this time, in addition to the temporary worsening of previous Lyme symptoms, one may also experience chills, low-grade fever, headache, increased joint or muscle pain, nausea, a drop in blood pressure levels, rash, and hives.

In some patients they occur only once or twice (if at all) and with others continue throughout the course of treatment, usually lessening in severity. They can occur and are more often described in cycles (example: every 4 weeks) and have been reported to last from days to weeks. The good news is that the herxheimer is thought to indicate that the antibiotics are indeed working and that following each worsening may bring about more improvement.

My Sofa Recliner & Desk

My Sofa Recliner & Desk

Well, I am on my second herxheimer reaction and am typing this from what is becoming a familiar place to me…our sofa recliner, wrapped in heat wraps. For a woman going through heat flashes, this is NOT good (lol)! The first time I herxed, I missed 1 full day of work and a few hours the next morning. On this herxing episode, I will be missing 3 days. The frustrating part is you never know when it’s coming. I felt fine all day Monday & Tuesday, and then Tuesday evening, I began to get body aches, a slight fever, and fatigue, and I knew I was beginning another herxing episode.

So what is God teaching me through these herxheimer episodes? First, I’m not in control; God is (which is a good thing!). Second, it’s easy  to get disappointed, helpless, needy, and self-centered. To combat this, I ask God to show me someone who needs encouragement and I call, text, email, or actually put a card in the mail (how novel, huh?). Since I am an extrovert, I also need to talk to people, so I pick up the phone and call someone. Third, because this disease and some other weird ailments I’ve had are hard for others to understand, God is allowing me to share in the sufferings of Christ. To know what it’s like to be misunderstood, to know what it’s like to be in pain, to know what loneliness.

The beauty in snow

The beauty in snow

But God also keeps me still so I can hear His voice, know there’s hope, and enjoy the beauty of His creation.

Guest Blog from Dave Hershey, Campus Pastor for Penn State Berks

Today  I share a post from a guest blogger, Dave Hershey. Dave is the campus pastor for Penn State Berks and leads a club on campus called Christian Student Fellowship (CSF).  This post is one of the best explanations on sharing Jesus that I’ve ever read. If you enjoy this post, please visit Dave’s blog at http://davehershey.wordpress.com.

What A Student Who Loves Doctor Who Taught me About Faith

On Monday, November 23, I found myself in a theater surrounded by “Whovians.”  For those of you who don’t know – a “Whovian” is a fan of the British television show Doctor Who, which recently celebrated its 50th anniversary.  The show’s recent popularity is due to its return in 2005 after a long hiatus.  Many young people on both sides of the Atlantic have become fans.

The show follows the Doctor, a Time Lord, who travels through Space and Time in the TARDIS that looks like a British police box.  When mortally injured the doctor can regenerate into a new body.  This is the reason the show has lasted for fifty years, with eleven (or is it twelve?) different men portraying the Doctor.

I first heard of Doctor Who a two years ago from a student named Elizabeth.  Elizabeth came to CSF to observe us for a project she had to do in one of her classes (a mini-ethnography).  We have had a few students come to CSF for this reason before and usually they don’t hang around after the project is over.  I don’t think Elizabeth planned to either, but she did.

She found a welcoming and life-giving community in CSF.  When she interviewed me for the assignment we discussed her Catholic faith and whether that was a barrier to being a part of CSF.  I recall explaining that CSF seeks to be a place where all Christians can come and grow in their faith in Jesus.  (Of course, we also hope to create a place where people who are not yet disciples of Jesus can come and learn too.)  I know there are things Christians disagree on, and we discuss such things sometimes, but we try our best to lay those aside on campus so we can focus on what really matters.  On a campus filled with broken people there are more important things to do then argue our particular theologies.  What matters on campus is learning to love Jesus and spread this love to others.

Soon Elizabeth became good friends with many members of CSF.  She was part of an especially tight-knit group of ladies.  The next year, which was last year, she served on our leadership team as secretary.  Now in her senior year she continues to be involved in CSF.  Just a few weeks ago I took a group of students to the Penn State football game to work in a concession stand with the CSF group up there. Elizabeth could hardly hold in her excitement as she got to see Hannah, one of her best friends, and one of the first students to welcome her to CSF two years ago.

Elizabeth is a huge Doctor Who fan.  When you meet Elizabeth you soon find someone who enjoys good books, movies and television shows.  I suppose this is appropriate for someone who is a professional writing major.  As Elizabeth talked about Doctor Who other students who watched it also talked about it.  Others of us were so intrigued that we soon began watching it too.

This is how I found myself in a theater full of Whovians the Monday before Thanksgiving.  Bryson is another of those students who first welcomed Elizabeth to CSF.  He is now at University Park but was home for the holiday.  I joined Bryson and Elizabeth in watching the 50th anniversary special in 3D on the big screen.  Fun, nerdy times!

One evening a few months ago I was at the diner with CSF students.   They were talking about Doctor Who.  There was probably a new student who had just confessed to not ever seeing it.  I recall Elizabeth made an interesting comment – “I never tell people to watch Doctor Who.  I just talk about how much I enjoy it and they want to watch it.”

“And there’s your lesson on evangelism for the night,” was my response.

Too often we Christians create this huge pressure to sell Jesus to unwilling customers.  We approach it like a used-car salesman.  We hate it though as deep down we feel dirty…kind of like our stereotype of a used-car salesman.  But this is not what evangelism is.

What if evangelism is simply talking about what we are passionate about, what defines us, and what if this is primarily Jesus Christ?  I don’t need to take a class to learn how to tell someone I love my wife.  If you spend time talking to me, my likes and dislikes will come out.  And just as people may watch a television show we are very excited about, they may decide to visit our church or crack a Bible due to our excitement.

I feel the need to add a caution – this is not a program.  This does not mean we need to artificially create a false-excitement for the Jesus.  When I talk about my wife, or a book I really liked, or a movie I saw recently, I don’t pretend to like it out of outside pressure to get you to like it.  I really and truly love something and it naturally bubbles out of me.

So the challenge for me, the challenge I give my students and those reading this now, is to get to know Jesus.  Read the gospels, encounter the real and amazing person at the core of our faith.  I believe through this you won’t help but talk about him.   As you do, you’ll find others are wanting to marathon the Gospels much like marathoning episodes of Doctor Who on Netflix.

God’s Encouragement…Just When Needed

Hi all,

I haven’t written in my blog in months due to being offered a new position on our campus last fall which has had a high learning curve and some ongoing health issues, which limited me in where I could invest my time and talents. As a ‘wannabe’ writer, it has been discouraging not to be able to put pen to paper, or fingers to keyboard, and share more of what God is revealing to me and doing in my life that might be an encouragement to you. However, God provided encouragement just wnen I needed it.

I attended and served at an event called Super Saturday 2012 yesterday (3/24/12), sponsored by the Lancaster (PA) Christian Writers Group (LCW), and it was encouraging to be around other writers who also struggle with ideas, time, rejections, and rewrites. I absorbed great information in workshops, had a piece of writing critiqued, and had great conversations with presenters and other writers.

Jeanette Windle, a missionary, founder of LCW, and award winning novelist, coordinated the event and was both funny and gracious in her opening remarks. She shared ideas from a great philosopher, Charlie Brown’s Snoopy, which brought laughs. She shared a quote from Michael Kanin, which we all related to, “I don’t like to write, but I love to have written.”

She encouraged us to believe in the ‘But God’ factor, a factor that will put us in a place in our writing that may seem unreachable or impossible, ‘but God’ will and can turn all of our efforts and plans on end. So we need to write, need to learn our craft of writing, but we need to leave the results up to God. It has been a privilege to get to know Jeanette by being involved in LCW and reading her political suspense novels.

Marlene Bagnull, founder of the Colorado Christian Writers Conference and the Greater Philadelphia Christian Writers Conference, told us to consider submitting letters to the editor of our local newspaper because it’s the section most people read in their daily newspaper, and especially those who might have the power to make the changes. You don’t have to be a ‘writer’ to do that; just share your heart and concern for a hurting world from a heart that knows Christ, and God will show up.

I find God surprises me in the most unexpected places with His presence. Like last week when my husband and I were teaching the young adult Sunday School class that we’ve been teaching for almost a year now, and we were discussing a topic which was somehwhat uncomfortable for those in the class–sexual immorality. It ‘just so happens’ that a young woman who attended our church previously who is now married ‘just happened’ to be in our class. She was so open and vulnerable about what God had shown her and her fiance about sexual purity and the struggle they both had with that. She talked about the blessings God has reaped on her as a result of her faithfulness to being sexually pure till her marriage, and her much greater understanding of Lordship and God’s amazing love as a result of her obedience. My husband and I could never have spoken to the young adults like she did, and God surprised us all!

Today we talked in our class about joy and being joyful always and what that looks like in our lives. It was another great discussion and God birthed a devotional idea in my mind, which I hope to get from my mind to my fingers to my keyboard this week.

As you read this, I hope you think about the people you come in contact with everyday and how they can see you being joyful always by living above your circumstances, by caring for others when you are hurting yourself, by doing excellent work without complaining, by edifying your spouse rather than complaining about him/her, by spending time with Christ in prayer or in His Word so yu can do all of that and much more!

Have a joyful day!