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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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!

 

The Bionic Woman

bionic woman

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?

running in circlesAfter 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?

 

My Glow-in-the-Dark Cane

My Glow-in-the-Dark Cane

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?

walking outside 2Well, 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.

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.

 

 

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.