Here’s a link to a great but brief article from the Huffington Post called “The Hidden Epidemic of Lyme Disease”: http://www.huffingtonpost.com/leo-galland-md/personal-health-_b_5461081.html. It’s worth five minutes of your time.
Here’s a link to a great but brief article from the Huffington Post called “The Hidden Epidemic of Lyme Disease”: http://www.huffingtonpost.com/leo-galland-md/personal-health-_b_5461081.html. It’s worth five minutes of your time.
Sorry for the delay in this post, but I was making changes in the appearance of my blog.
The Bionic Woman is an American television series starring Lindsay Wagner that aired for three seasons between 1976 and 1978 as a spin off from The Six Million Dollar Man. Wagner stars as tennis pro Jaime Sommers who is nearly killed in a skydiving accident. Her life is saved using “bionic” surgical implants similar to those of The Six Million Dollar Man. As the result of Jaime’s bionics, she has amplified hearing in her right ear, a greatly strengthened right arm, and stronger and enhanced legs which enable her to run at speeds exceeding 60 miles per hour.
Well, I’m not The Bionic Woman, but part of me went bionic on May 9 when I had a total hip replacement of my right hip. It’s kind of surprising for a woman who recently turned 59, had been a group fitness instructor for 28 years, works full-time, and leads a very active life with her husband. Frankly, I was shocked! Here’s the backstory.
In December 2012, I had a robotic-assisted hysterectomy to remove painful endometriosis. It was a very successful surgery….we thought. However, when I returned to work a month later, I began to experience pain in my right lower back and pelvic area. No, it can’t be…..it should be all gone.
After several examinations by the doctor, seeing my chiropractor (who noticed I had a limited range of motion in my right hip), and getting xrays and an MRI from a hip orthopedic doctor, I found out I had some arthritis, an arthritic cyst, and some bursitis in my right hip. After several hip injections with little pain relief, I went to a pain control doctor, who gave me several steroid injections in my spine, as I have degenerative discs in my lower back. Still, no relief.
Eventually, I was able to plead my case with the gynecologist that endometriosis was still present. He did some research and was hesitant, but he trusted that I knew my body. On August 19, I had a laparascopy and two small spots of endometriosis were found embedded in deep tissue and sitting on nerves, which was causing the intense pain. Whew…I was right and now the pain is gone. Woo! Hoo! Thank you, God, for the perseverance and the trust and skilled hands of my gynecologist.
I recovered from that surgery well, but a nagging pain lingered between my right hip and back. Back to the chiropractor and physical therapist I went. PT did not bring pain relief or improved range of motion, so my PT recommended I see a doctor who does hip arthroscopy, as he might be able to open the hip, and fix what is wrong. Surgery…really?
After having a pain injection and MRI with the hip arthroscopic doctor, he stated that my hip was too deteriorated to correct with arthroscopy, and he wanted me to see the hip replacement surgeon in their practice. It is now December and both the hip replacement surgeon there and the original hip surgeon in my city agreed I’m not ready for a hip replacement, that it might be my back, and I should go back to the pain control doctor to see if injections might bring pain relief. Oh, you’ve got to be kidding me! I’m running around in circles here, God. Please direct my path.
Mid-January through March, I had several injections from the pain control doctor that brought limited and temporary relief. He sent me for nerve conduction studies, which are all normal. I also found out in January that my Lyme disease had returned. Ugh…can’t be. How much more, God?
I returned to my PT, who recommended I purchase a cane as my gait was really uneven. If I would have had a cane in my hand, I would have probably hit him with it! A cane? At my age?
So I decided if I’m going to carry a cane, I would go in style, so I purchased a fold-up cane called “Glow ‘N Go” where the handle and tip glow in the dark:-) Fun! And it was quite a conversation piece:-)
After a few weeks of therapy, my PT recommended I go back to the surgeon as my hip was not improving. I did that and told the doctor I had done injections for my back and was doing PT, but the hip was getting worse. He did a standing hip xray, and when he pulled it up on the computer, he turned to me and said, “Well, I now can do a hip replacement.” (He doesn’t mince words.)
I was shocked and asked, “What happened in the last 3 months?” He put the xrays side by side. The one from December had cartilage and the one he took that day had none. I was bone-on-bone in my right hip joint.
Startled, I asked, “Isn’t that unusual?”
He said, “Everyone deteriorates at a different rates, but the end result is the same–the hip needs to be replaced. Now, let’s get a date on my calendar.” Oh, I can’t believe we’ve actually come to this point. It’s all moving so fast.
After doing some research, getting a second opinion from the hip ortho doc in my city, and getting questions answered from the surgeon, I made arrangements to be out of work for at least six weeks and for my husband to be with me the first week after surgery. Before the surgery, I had one lingering question that no one had been able to answer….
I had an appointment with my Lyme doctor a week before surgery, explained to him the quick deterioration of my hip and asked him, “Did Lyme disease cause this quick deterioration?”
Without hesitation, he said, “Absolutely. Yes. Lyme disease can affect the skin, brain, nervous system, muscles, bones, and cartilage. After my own knee quickly deteriorated and I had a knee replacement, I surveyed my patients and researched Lyme disease studies. The research indicates that infectious spirochetes [the tightly coiled bacteria that causes Lyme symptoms] can remain adjacent to or embedded in cartilage for extended periods,even after antibiotic treatment. Also spirochetes love hiding in cartilage because it’s one of the immune system’s weak spots.” Ok, great…I had to ask, didn’t I?
Well, I had an answer, but it was another ugly surprise about this disease called Lyme. I am recovering very well from the hip replacement surgery, and my strength is coming back quickly because I had a newer procedure called the direct anterior hip approach, which doesn’t cut any muscle. More about that in a future blog.
There are days my recovery has been slowed or halted because of overall muscle and body aches from Lyme, but I am now walking with that flashy “Glow ‘N Go” cane again and have already put that walker you see in the picture away.
Something I read in a Karen Kingsbury novel while I was recovering has stuck with me. One of the characters in the book had just had a delicate surgery, and another character asked the doctor, “What if it doesn’t take?”
The doctor replied, “Oh, it’ll take. In fact, the area where there was trauma, replacement, and healing will actually be stronger than the unaffected parts of his body.” I thought about how amazing God is that He gives this skill and wisdom to doctors, and that He designed our bodies to heal even stronger. Where there was trauma and eventually healing, that section would be stronger than any other.
And so it is in our marriages, our families, our work, and our relationships. Trauma will come to many relationships. Disagreements, differences, arguments….sometimes acute or chronic pain. God knew we’d need some surgery, so He gave us His Word full of advice on how to make points of trauma, places of healing. And come out stronger because of our obedience and His Grace.
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.
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.”
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
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.
I 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.
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.
But God also keeps me still so I can hear His voice, know there’s hope, and enjoy the beauty of His creation.
“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.
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.
I couldn’t resist using a song from the 60’s as the title for this post. It’s been quite awhile since I’ve posted here, and I hope to change that going forward. Yet, some of that is out of my control. I last posted in December 2012. I had robotic-assisted surgery for a hysterectomy, and my first few weeks were amazing…pain free. Shortly after Christmas, pain returned and except for working, much of my spare time was spent on referrals from specialist to specialist searching for pain control.
None were successful, so I’m kind of back to square one, scheduled for surgery next Monday, August 19, to see what’s causing the pain. It’s going to be a laparoscopy with the goal of removing any scar tissue, adhesions, etc. that are causing pain. It probably sounds weird, but I’m looking forward to it. After 8 months of unexpected pain, I’m praying for skilled hands of the surgeons, being pain free, and being off work only a week (the expected recovery period). I covet your prayers for perseverance in the next week, for the surgery, and for the recovery.
On a completely different note, I attended the Greater Philadelphia Christian Writers Conference July 31-Aug. 3, absorbing information and being encouraged by other Christian writers such as Bob Hostetler, Ken Gire, Cindy Sproles, and many others. I had the opportunity to have 15-minute appointments with and have my writing critique by agents and editors. It was my 4th conference, and it’s always both overwhelming and uplifting. I hope to post some of what I learned in future posts.
For now, I just want to let you know I’m back and hope to be sharing my heart and hearing about what God has placed on your heart, too!