Invisible Illness Awareness Week is September 28 – October 4

This post is from the Rest Ministries Invisible Illness Week website (http://invisibleillnessweek.com/)

What is your invisible fight?

Invisible Illness Awareness Week is September 28 – October 4 and we are creating a big buzz in social media, spurring on awareness, understanding, and dispelling myths and misconceptions about living with illness.

We live in a culture that understands acute sickness. Tell a friend you have strep throat and your friend has an idea about what your next three days will entail. Friends grasp your need to rest, to eat a certain way, that you may or may not be online, the amount of medication you may take, and that you likely won’t be getting together for an event or working.

Chronic illness, however, is confusing to most people.

Illnesses that are indefinite (chronic) have a growing list of symptoms that differ between those with the same illness–and overlap with those who have different illnesses. There are no rules or guidelines about what you can and can’t do or should or shouldn’t do.

How can a person with illness barely be able to get out of bed one day and running errands for two hours the next day? If the medications are working, why haven’t you returned to your favorite activities? Are you depressed, and that is why you keep going back to the doctors over and over?

All of these are common assumptions from one who has not experienced a chronic illness.

Invisible Illness Awareness Week is trying to change that with a 2015 “My Invisible Fight Photo Campaign”

What are the photos of?

This is the fun part! Take photos of anything that is an #invisiblefight for you.

What is a fight for you that few people would even notice or understand?

Some ideas of invisible fight?

  • A staircase (or even one stair!)
  • A restaurant menu
  • The shower
  • The scale
  • A jar of spaghetti sauce (cannot open it!)
  • A pair of shoes
  • Your bed
  • A certain outfit or item of clothing
  • A blow dryer (that is heavy to lift)
  • A heavy door
  • A car’s steering wheel
  • Your purse (too heavy to carry?)

It doesn’t have to signify something you cannot do. It can represent something that is just an extra challenge for you, something that makes you sigh with frustration, or perhaps hold your breath with a bit of anxiety.

You can take as many photos as you want and share them all over the place between now and October 4th.

If you can, add #MyInvisibleFight to the actual photo.

What hashtags to use

The specific hashtag for this event is #MyInvisibleFight.

Additional hashtags you can use that are for Invisible Illness Awareness Week 2015 are: #invisibleillness #invisiblefight and #iiwk15.

Here is one of the photos I’ve posted:

A pic of how I usually look to others, and how I look at home. It was hard to post the 2nd pic, but it's important to make people see the "visible" part of invisible illness. #myinvisiblefight #iiwk #invisibleillness

A pic of how I usually look to others, and how I look at home. It was hard to post the 2nd pic, but it’s important to make people see the “visible” part of invisible illness. #myinvisiblefight #iiwk #invisibleillness

Lisa Copen established Invisible Illness Awareness Week in 2002 and she is excited to see how you touch lives this year in 2015!

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.

 

The Heat of Life Ripens Our Ministry

This is a devotional I wrote that was published on the Rest Ministries website (http://restministries.com).

“They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are alwaysRM ripen image for devo_10-5-14 green. It has no worries in a year of drought and never fails to bear fruit” (Jeremiah 17:8).

I live in Pennsylvania and by mid-August, the hot, humid summers give us ripe, red, juicy tomatoes. The kind that you take off the vine and bite into, with the juice dripping down your chin.

But not this year. It’s mid-August as I write this and our tomatoes are still green. Others who planted tomatoes are having the same problem because we haven’t had a hot, steamy summer, like we usually do. In fact, we’ve had only nine days at 90 degrees or above.

As a person who is not fond of hot, humid weather, I’m not complaining. However, our green tomatoes are proof that they only thrive in these conditions. This summer, the plants craved as much sun as their little solar-collecting leaves could gather.

Chronic illness can be like these tomato plants. We yearn for days when we have less pain, more mental clarity, and are more productive. Yet, our ministry to others is most “ripe” because we’ve experienced the discomfort of blistering heat, and the distress of oppressing humidity.

Our ministry is most “ripe” because we are totally dependent on God for our next breath, or our next hour.

We can only understand others’ suffering if we walk that same road. I empathize with women who have endometriosis because I’ve had it for 25 years and had it recur after a hysterectomy.

Our family helps others navigate Crohn’s disease and Ulcerative Colitis because three family members have these diseases. I understand the mental and physical pain that comes with depression because I’ve “been there.”

Though none of us chooses the path of illness, God can use it to comfort others in their pain, loneliness, and suffering. As we rely on God for our strength and perseverance in the “heat” of our illness, He is ripening us to minister to others.

When you can’t take another day of the “heat and humidity” of your illness, know that God is preparing someone to come and pluck you from His vine and to enjoy the juicy morsels of godly wisdom and comfort that only your experience can provide.

Prayer: Lord, it’s hard for us to reach out to others when the “heat” of our illness saps all of our energy. When we have better days or go into remission, help us to look for people in our lives who have chronic illness and share our experiences to minister to their hearts. Amen.

What have you discovered in your journey with chronic illness that could be helpful to someone else?

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.

 

 

A Letter to Doctors

Doctor Visit

Doctor Visit (Photo credit: Forty Two.)

This letter has been on my mind and my heart for over ten years now. It is not an easy letter to write, and it may not be an easy letter for doctors to read, but I hope it’s an encouragement for all who do read it.

I’m grateful for the men and women who have chosen the grueling and difficult path of medical school, followed by several years of residency and internship to become physicians. The many doctors who have spent years researching diseases and chronic illnesses, and who have developed successful treatments have my admiration and thanks for their passion and their determination. I’m certainly indebted to the many doctors who rise early to do hospital rounds, who see patients and/or perform surgery during the day, who return phone calls or review patient records at night, and who often sacrifice time with their families to bring health to our lives.

Our family has four people who have been diagnosed with chronic illnesses and over a 25-year period, we have seen hundreds of doctors in several states for diagnoses, second opinions, treatments, procedures and tests. We have seen the “good, the bad, and the ugly.”

This article contains no statistics, no results from double-blind studies, no comparison of the effectiveness of medical treatments, and no information from clinical trials. It does contain the observations of a patient, wife, and mother and her experiences with and perspective on our family’s encounters with the medical community. If you looked at our calendar the last few years, you’d see our family has had an average of 60 visits to doctors each year, not including visits for laboratory tests or procedures.

When our children lived under our roof full-time, I was the family manager of four people’s doctor’s appointments, medications, and treatment regimens. In 1982, I was diagnosed with Ulcerative Colitis; I also was diagnosed with endometriosis several years later, which required several laparoscopies and medication for treatment, and most recently, a robotic-assisted hysterectomy. Approximately four years ago, I was diagnosed with Late Stage Lyme Disease, which is very controversial. I have had several procedures to remove kidney stones and to open more fully my urinary tract, and I have hypothyroidism.

My husband of 32 years was diagnosed with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), officially in 1990, and we had to travel to the Cleveland Clinic to get that diagnosis and a treatment plan. Our 22-year old son was diagnosed with Crohn’s Disease in 1996 at the young age of seven at Penn State Hershey Medical Center. Our 25-year old daughter was diagnosed with Crohn’s Disease in 2006 in her sophomore year of college. There are very few lab tests,  procedures, diets, food regimens, and alternative therapies that our family has not tried.

We are a family who have always been active physically and have maintained relatively healthy diets and lifestyles. When I met my husband, he was an avid racquetball player; he then became an avid runner and now does cardio workouts and strength training at a local fitness center at least five times per week. I have been a group fitness instructor for over 25 years and am certified as a personal trainer. We are not a family that is careless about our eating habits, and many of our doctors have attributed our ability to stay active in our work and other activities to our healthy lifestyle.

Treating a patient with a chronic illness that has no cure can be a frustrating experience for doctors, and is often the most difficult patient to care for. Most doctors only see the patient 10-15 minutes every four to six months. Unless there’s a new medication or treatment that has been developed or the patient has had some change in symptoms, doctors often feel they have little to offer, and the patient lives in the status quo. There can be a feeling of frustration, defeat, and helplessness on both sides.

There are several who have treated us who have been able to compassionately overcome this dilemma, providing encouragement and understanding in the midst of chaos.

There’s the obstetrician/gynecologist who delivered both of our children (and continues to treat me today) who always considers not just my health status, but the health status of our whole family before prescribing any treatments or going forward with any procedures. He treats the whole person, physically, mentally, and emotionally.

There’s the infectious disease doctor we found after we returned from the Cleveland Clinic who willingly and passionately treated patients with HIV, CFIDS, SAD (Seasonal Affect Disorder) and other chronic and sometimes fatal diseases, who was ALWAYS on time with his appointments, and who did not “write off” new symptoms of the disease he was currently treating. He was willing to turn over every stone to find a way to bring more health and wholeness to his patients. When this doctor retired from his practice, he referred my husband to a young doctor, who, although he didn’t know as much about CFIDS or infectious disease, was teachable, humble, and willing to learn through resources my husband offered him. He also cared as much about being a good husband, father, and man of character as he did about being a good doctor.

There’s the very knowledgeable, kind, and caring pediatric gastroenterologist who diagnosed our son’s Crohn’s Disease (at age 7) with much anguish, and explained his treatment thoughts and plans in detail, not only to us as the parents, but also to our son. As our son moved into adolescence, this doctor was also able to provide a safe and comfortable environment for a teenage boy to talk about his symptoms, for a disease that is often very embarrassing to talk about.

There’s the very impassioned family doctor who we found about seven years ago who treated and walked alongside me eight years ago, when I was diagnosed with clinical depression, and whose knowledge, treatment, and compassion proved to be a much greater blessing than more specialized approaches. She listens to her patients and trusts that they know their bodies better than she does, and then she responds with appropriate action and concern. She’s not afraid to try other approaches when recommended treatments are not effective. For example, she was very supportive of the controversial treatment I received for my Late Stage Lyme Disease (from an infectious disease specialist), primarily because my health improved as a result of the treatments.

These are a few of the “gems” we have uncovered in our medical journey and our lives are better in many ways, even if not physically, for our interaction with them. I’ve been giving a lot of thought to what makes these “gems” shine.

First, they not only have a passion for medicine and their specific discipline, but they also have a passion for learning about and knowing their patients. They listen, I mean they really listen, when a patient describes symptoms, reactions to medications, or how they are feeling overall. And when they listen, they also discern or search out the fears, concerns, anxieties, and worries that lie behind what their patients have verbally and visually conveyed. And then they go one step further and take this information into consideration before considering or discussing any treatment regimens.

Second, these “gems” talk to patients at the patients’ intellectual level. They don’t talk in medical language that is too difficult to understand, or in a tone that is condescending. Nor do they make their explanations too simple or condensed that they gloss over important information that patients need to know. If they have to explain a complicated medical situation or procedure, they do so with aids that help visualize what is happening/will happen and with words that explain how the procedure will be beneficial or how the situation is affecting the body. These doctors allow time for questions and concerns.

Third, all of these doctors had or wanted strong family relationships, and talked about their families or asked about my family at most visits. Because the treatment of a medical condition can change the dynamics in a family, these physicians take into consideration how a medical diagnosis and its short and long-term treatment may affect each family member. Before prescribing treatment, my gynecologist will always check to see how our other family members are doing, what other medical issues I may be dealing with, and how much time I will have to be absent from work and other activities. By inquiring of these other aspects of a patient’s life, a physician can gain insight into the level of treatment a patient can tolerate, and can allow the patient to actively participate in that treatment plan.

Fourth, when a patient calls into these physicians’ offices with a question or a concern, someone in the physician’s office returns the call within a reasonable amount of time, usually the same day. When necessary, the physician will speak to the patient personally to explain in greater detail, allay any concerns or fears, or encourage the patient. In addition to the initial response, these physicians also have consistent follow up, either personally or through their staff, when necessary.

Finally, my husband’s and my faith in God is of primary importance in our lives, and we believe that faith has given us the strength, courage, patience, and endurance needed to survive and even to be strengthened during the last 25+ years with our chronic health issues. These “gems” have either shared and expressed that faith or acknowledged and admired its significance in our lives. To one of these doctors who walked alongside us through a difficult and uncertain time, I gave a framed certificate that said, “Find a doctor who believes that God is greater than the medical profession and you have found a rare gem.”

All of these doctors indicated that they learn much more about life, what’s important in life, and how to handle adversity and chronic pain and illness from their patients who have endured…who have “fought the good fight”……who have “kept their eyes on the prize”…..and their lives are richer for the lessons they have learned.

So the next time you have an appointment with a “gem” of a doctor, don’t forget to tell him or her how special they are to you, not just for their medical treatment, but for looking at you as a “whole person,” not just as a disease or illness. And that “gem” of a doctor might just “shine” for other patients, too!