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.

 

Gratefulness in the Midst of the Battle

Ecstatic! Amazed! Grateful! I feel all of these and more about my right hip replacement I had 3 months ago. I’ve been back to work full-time since early July, and am tolerating that very well. Each day I gain strength and flexibility in my hip and leg, and I marvel at the skill of the surgeon and the way God made our bodies to heal!

Although there were days that were difficult, I am grateful to God for many of you who prayed, sent cards, made meals, drove me to appointments and physical therapy. I’m especially grateful for my servant husband, who faithfully filled my ice machine every night to reduce the swelling in my leg, who assisted me when I was learning to walk with a walker, then a cane, then no support, and who didn’t expect me to make meals once I was healthier and started back to work. We ate dinners from Chipotle, Chili’s, Moe’s, and some of our other favorite haunts more than we cooked…and that is OK:-)

I’m also grateful to my physical therapist, Randy, from Commonwealth Orthopaedic Associates Physical Therapy at Body Zone Sports & Wellness Center. He has rehabilitated just about every major part of my body over the last 12 years with skill, encouragement, and a lot of laughs.

On the disappointing news front, my Lyme disease is still active, and my pain from endometriosis is beginning to rear its ugly head again. And yes, that’s after a hysterectomy and a subsequent laparoscopy to remove endo after the hysterectomy.

Regarding the Lyme disease, my doctor thought I might be in remission, but when the blood test came back, it showed I still had active disease. I am also beginning to have some symptoms of a co-infection, Babesia. So I will be back at the Lyme doctor in September. In the meantime, I’ll take oral antibiotics to continue to fight the Lyme.

And regarding the endometriosis, apparently what I’m experiencing isn’t all that uncommon. Many women believe that a hysterectomy is a cure for endometriosis, but actually, it just gives doctors more treatment options. However, many of these treatment options don’t work.

An online article by The Cleveland Clinic states, “Whether endometriosis will recur after surgery depends on how severe the disease was at the time of surgery and how completely the surgery removed your lesions. Lesions that appear after surgery may be new or pre-existing. For this reason, it may be difficult for your doctor to tell whether your disease has come back or is progressing. The most recent studies have shown that endometriosis recurs at a rate of 20 to 40 percent within five years following conservative surgery. Um hmm….you read that correctly…..20 to 40 percent.

About 5 million American women have endometriosis. Endometriosis can occur in teenagers and adult women of all ages, but most typically it occurs in women ages 25 – 40. Mind originally occurred in 1988 when I was 33. I had about 4 laparoscopies over a period of 20 years before I had the hysterectomy and subsequent laparoscopy last August in 2013.

Implants can form in many areas, most commonly in the following locations in the pelvis: ovaries, fallopian tubes, uterine surface, cul-de-sac (an area between the uterus and rectum), bowel, bladder, rectum, and the peritoneum (the smooth surface lining that covers the entire wall of the abdomen and folds over inner organs in the pelvic area). Rarely, remote sites of endometriosis may include the spinal column, nose, lungs, pelvic lymph nodes, the forearm, and the thigh.

On my last visit to my gynecologist, whom I’ve had for 31 years, he said my exam was better than previous ones, but I was tender in the spots where he found endometriosis before. So we decided to wait until I’m at least 6 months post-op from my hip replacement to give the nerves, muscles, and tendons time to heal. After that, we will decide how to address the endometrial pain going forward. He says it will probably be another laparoscopy.

So, even though I sometimes feel like just pulling the covers over my head and sleeping through life, God has shown me that I need to be grateful for life, whatever state I’m in. If I wake up in the morning, can put my feet on the ground and move forward, it’s a blessed day. I just ask God for His strength and wisdom to give me a good attitude and the physical and mental ability to do the tasks for each day.

So stay tuned for Lyme and endometriosis updates…and keep those prayers coming!

 

Lyme Takes Time

So sorry it’s been so long since I’ve posted in my blog, but the last few weeks have been very challenging physically. Although I continue to have “herxing” with my Lyme disease about every 3-4 weeks that last 2-3 days, I also had hip pain that increased to the point that I was walking with a cane. I didn’t have the motivation or energy to post on my blog.

Infusion Room

Infusion Room

I have visits scheduled with my Lyme doctor about every six weeks, and I get an infusion of various vitamins and supplements to fight the disease and support my immune system. My doctor’s office has a back room that contains about 20 recliners for patients to sit in while doing their infusions.

It’s a very pleasant and peaceful place, and the scenery helps take your mind off why you’re there. A new nurse had started just a few days before my last infusion. Inwardly, I sighed and clenched my teeth because my veins are notoriously bad for getting blood or inserting IVs. I’m what the medical profession calls a “hard stick.”

Finally, a successful IV is in place for the infusion:-)

Finally, a successful IV is in place for the infusion:-)

So I prayed…through three sticks…without success. The nurse was more upset than I was. She finally got the doctor who showed her a few “tricks” for “hard sticks”, and he got right in without pain. Woo! Hoo! Prayers answered!

A rather young couple sat across from me getting their infusions, and witnessed this. The woman said, “I’m glad I’m not the only one that has that problem.”

“Yeah,” I told her, “it happens to me a lot. I know it’s not the nurse’s fault; it’s just the way my veins are made.” We both had been stuck more times than we could even remember. I asked if they both had Lyme, and they said yes. The woman said, “But that’s not the worst part. Our little girl has Lyme disease, too.”

“How old is your little girl?” I asked.

“She’s only 13. She really hasn’t had a normal childhood.” I thought what I was doing at age 13 and how concerned I was about my looks and my friends, and I didn’t even give my health a second thought. My heart went out to them. Then she said something that startled me.

The mom said, “The doctor believes she got Lyme when she was in utero with me…in my womb before she was born.” Even someone like myself who keeps educated about Lyme and related co-infections was shocked and so sad to hear that Lyme can be passed to our babies in the womb. The more I learn, the more insidious this disease becomes.

Although I struggle with the symptoms of this disease, God always seems to find a way to show me how thankful I can be. He is providing doctors, nurses, and a supportive husband to help me through this disease. It would break my heart if I had to watch my child battle Lyme (because of the many unknowns), and I pray for all parents who have a child with Lyme.

Although I have two grown children with Crohn’s disease, that disease has some predictable patterns and many medicines available to keep patients in remission.

Going back to my hip pain , I talked to my Lyme doctor about how quickly my hip had deteriorated when I had this last visit in late April. I had visited two orthopedic hip specialists in late December. Although I had arthritis in my hip, an arthritic cyst, and a

Getting my infusion

Getting my infusion

labral tear, neither said I was ready for hip replacement surgery. They recommended I go back to my pain control doctor to see if the pain might be coming from the degenerative discs in my lower back.

I will write more about my hip deterioration in my next post, and whether it was related to my active Lyme. So stay tuned….I promise I will post again within the week.

 

 

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.

Lyme Disease…the Battle Begins Again

“Wow, that just doesn’t make sense,” I said to the ENT doctor. He explained how I had some structural problems in my nose that are probably the cause of some severe sinus pain I’ve been experiencing for the past 6 months. It didn’t make sense because I’ve never had sinus problems in my life, and now, all of sudden, I was having sinus pain so bad, I was calling off work and sometimes taking Vicodin for the pain.

Over the past year, I also began to have severe pain in my right hip. After several visits to the hip orthopedic doctor, several injections to the hip joint, and 8 weeks of physical therapy, an MRI showed I had several structural problems and a labral tear. I was referred to a doctor who does hip arthroscopy and another who does hip replacement. Both said I didn’t actually have a labral tear, but that the tissue attaching to my hip joint was deteriorating, and that can’t be fixed with surgery. They both said it really didn’t make sense for a woman of my age who has been physically active her whole life. Hmmm….something else that doesn’t make sense.

Could my Lyme disease be active again? I didn’t really know if I wanted the answer to that question, but after a friend also asked me the question, I knew I had to pursue it. I saw my Lyme doctor on January 28 and we discussed what I described above, along with some short-term memory issues I was having, two surgeries within a year, not being able to exercise in a year, etc. He said he didn’t think it was my Lyme, but there was one test that would tell us for sure, CD57.

His office drew the blood that day, and 3 days later called to tell me that my Lyme was active again. Tears welled up in my eyes. I didn’t really think this would return. Even the doctor thought that. I don’t want to go through this treatment again because I know I’ll get worse before I get better. God, give me strength.

So the battle begins….again. I’m on two oral antibiotics, Doxycycline and Ceftin, and they are kicking my butt! I have debilitating fatigue, muscle aches/weakness, nausea, and some anxiety. Those symptoms are the Lyme disease reacting to the antibiotics, the disease fighting back against these invaders. Fortunately, this should only last a few days, and then level off.  I am on day 2 of these symptoms and off work. My prayer is that God will give me strength to return to work tomorrow (and beyond) and be able to be productive. In a few weeks, I return to the doctor’s office to get an infusion of glutathione to boost my immune system.

I will be chronicling my journey through this battle in this blog, with the hope that I can educate and help others who may be suffering with Lyme and may not even know it, or may not know where to turn for help. I will be explaining what the CD57 test is, and why it’s a good marker for Lyme. I will be sharing resources, both online and in your community. I will share what exercise works and what doesn’t.

But most of all, I want to share hope. Not only for you “Lymies” out there (Lymies are those with Lyme disease), but for those who struggle daily with chronic illness. Daily I cling to this verse from Psalm 16:8, “I keep my eyes always on the Lord.With him at my right hand, I will not be shaken.”

Okay, I do feel physically “shaken” today and there will be other days I “feel” the same, but I have a peace in the process, knowing the Lord is walking through this with me and He will not leave me.

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.

Crumbling Walls

Nehemiah rebuilding Jerusalem

Nehemiah rebuilding Jerusalem (Photo credit: Wikipedia)

This is a devotion that was published at http://christiandevotions.us on November 12, 2012:

“When I heard these things, I sat down and wept. For some days I mourned and fasted and prayed before the God of heaven…” Nehemiah 1:4

 One by one they tumbled out. I wanted to weep. Anxiety, sleeplessness, exhaustion, financial worries, and a serious accident due to being over-medicated. These were the prayer requests of the “good kids.” What about those who don’t know Christ?

 At the university where I work, there is a club where Christian students fellowship. My husband and I have come alongside the pastor to support him and his ministry to students there.

 One night toward the end of the semester, the students shared the prayer requests above. Then the female student next to me handed me a note asking me to pray for and help her with a serious personal issue that she was too ashamed to share. Her walls were crumbling. My heart was heavy for these students, and, on the way home, I wept. I fasted and prayed and several days later, God gave me a plan to help this student strengthen her walls.

 When Nehemiah’s brothers came to see him, Nehemiah cut the small talk and asked about the wall of Jerusalem. Sadly the brothers reported it had large holes, was in rubble, and the gates were burned down. Nehemiah’s first reaction? He sat down and wept. Then he fasted and prayed, asking for God’s favor and wisdom, which was granted.

 Jerusalem’s wall was rebuilt in an astounding 52 days. This filled Jerusalem’s enemies with fear and awe because they realized this could only be accomplished with the help of God.

 My tears for these students emanated from their current pain and the perseverance that would be needed to rebuild the holes in their walls. Rebuilding and restoration can be long and difficult, but drawing on God’s strength can favorably change that process.

 When your wall is crumbling, it’s okay to weep. Then fast and pray for God’s wisdom and forgiveness. Wait for Him to give you your first brick to rebuild your wall. As you obey Him, you will amaze others with your transformation, and you will draw others to Christ, as they will want to know the architect who remodeled and rebuilt your life.