Living an “Upside Down” Life

Related imageIt was one of those rare summer days. The sky was clear blue with a few clouds. There was low humidity, with a nice breeze. A perfect day to be outside!

But I missed most of it. I didn’t wake up till almost 2 p.m. due to a night of tossing and turning, then reading, then praying, then deep breathing, even a cup of tea to try to sleep. All due to side effects from a new medication. So frustrating!

Image result for sleepless nightHow many times are you awake in the middle of the night wondering why you can’t sleep? How many times have you taken a new medication that throws your schedule and life completely out of whack? In your chronic illness, how many times have you had a really “good” day, done too much, and paid the price the next day….or next few days? Or perhaps due to chronic fatigue, you sleep very late, and it’s difficult to get your day in sync with your family or other people.

If you have a chronic illness, your answer to the above questions is probably the same as mine, “countless times.” Many people without illness sometimes have trouble sleeping, but for those with chronic illness, it happens way too frequently.

Related imageIt makes for what I call an “upside down” life.

When Jesus walked this earth, he turned life upside down too.

“So the last will be first, and the first will be last.” (Matthew 20:16)
“Whoever wants to save their life will lose it, but whoever loses their life for me will find it.” (Matthew 16:25)

“The Pharisees asked the disciples, ‘Why does your teacher eat with tax collectors and sinners?’ Jesus said, ‘It is not the healthy who need a doctor, but the sick….I have not come to call the righteous, but sinners.'” (Matthew 9: 11-12)

Ultimately, Jesus was crucified on a cross, but rose to life three days later. “‘Sir,’ they said, ‘we remember that while he was still alive that deceiver said, ‘After three days I will rise again.’” (Matthew 27:63) “The angel spoke to the women: ‘There is nothing to fear here. I know you’re looking for Jesus, the One they nailed to the cross. He is not here. He was raised, just as he said.'”(Matthew 28-5-6)

Living an “upside down” life often makes me feel like a person who was called an “outcast” in Jesus’ day…someone who is last, who is losing their life, who often needs a doctor, who is unable to do what I desire or could once do because of illness.

Jesus not only turned life “upside down,” he endured one of the most troubled lives ever lived. During his ministry years, he had no home and no place to lay his head. He was questioned, misunderstood, persecuted, abandoned, hated, arrested, beaten, flogged, and crucified. He understands human suffering because he experienced it.

We can go to him with our sleepless nights, our discouragement, our loneliness, our tears, our frustrations, our disappointments, and our pain. He wants to hear when we feel lost, misunderstood, or out of sync with the world.

“We don’t have a priest who is out of touch with our reality. He’s been through weakness and testing, experienced it all—all but the sin. So let’s walk right up to him and get what he is so ready to give. Take the mercy, accept the help.” (Hebrews 4:15-16)

So go to him and give him your struggles. He may not take them away, but he will give you the strength and peace to walk through them. And he might just give you a little joy!

That glorious summer day that I missed? God gave me the strength late afternoon to take a walk, and get dinner and ice cream with my husband while sitting outside. As I enjoyed the warmth on my face and the breeze blowing through my hair, I silently said, “Thanks God for this special treat!”

This is Jackie…#livingwithhopethroughchronicillness

Welcome back…to the readers, not the disease

If you are a subscriber of my blog, thank you and welcome back! If you are new, thanks for stopping by! I hope all of you return.

The purpose of my blog is primarily to give people hope as they live daily with a chronic illness or with chronic pain. I live with three chronic illnesses: ulcerative colitis, endometriosis, and Lyme disease and its co-infections. I’ve written mostly about my journey with Lyme disease and endometriosis, as both can be very difficult to get diagnosed and even harder to get qualified and accurate treatment. See previous posts for more details about my journey.

It’s been a year and a half since I last did a post on this blog, and it was sporadic prior to that. That was primarily because I worked full time and was battling one of these illnesses on a regular basis.

So what’s changed?

In May 2018, my husband and I were blessed to be able to retire and pursue personal interests and ministries, travel (especially to see our grandkids), workout during the day, and sit down and read books by our favorite authors.

When people ask how we like retirement, our usual response is, “We’re still trying to figure it out.” Their response, “What’s to figure out? Just go enjoy yourself.” My husband and I are very active and are doing just that, but we are praying and asking God how He wants us to spend out retirement, so these years honor Him as much as our working years. Although retirement brings freedom, chronic illness remains, so much of our prayers are asking God for His wisdom on how and where we use our time. Going forward, I hope to share more about what retirement looks like and how chronic illness has impacted this time of our lives.

So I restart my blog now because God said the time is NOW. In fact, I couldn’t sleep last night because of rapid heartbeats, and the ideas for this post came then. I prayed I’d remember what sounded so good to me in my head last night. Also, those rapid heartbeats (technically Premature Ventricular Contractions-PVCs) and several other symptoms are an indication that my Lyme disease or one of its co-infections is active again.

In my retirement, I hope to post on a regular basis. I will not only share what living with hope through chronic illness looks like on a daily basis, but I plan to share:

  • tips and products that help you
  • resource links and lists for chronic illness
  • humorous episodes in my chronic illness journey
  • how chronic illness impacts a marriage
  • photos that bring hope and joy to my soul

I’m starting a new Facebook page called “Jackie’s Heart: Living with hope through chronic illness“. I will post there more frequently, sometimes with chronic illness memes, sometimes with a poll, sometimes with a giveaway! So please like my page to see more frequent posts. You can also follow me on Twitter @jackieconfalone, https://twitter.com/JackieConfalone.

I’d love to hear back from you in the comments. What do you want to know about living with chronic illness? What is your or your spouse’s/partner’s journey with chronic illness? What makes you laugh or cry? How has your faith helped you as you live daily with chronic illness?

I finish this post with one of my favorite Bible verses: “I keep my eyes always on the Lord. With him at my right hand, I will not be shaken.” (Psalm 16:8)

Coverage You Can Trust

“He will not let your foot slip—he who watches over you will not slumber; the Lord will keep you from all harm—he will watch over your life.” Psalm 121: 3, 7

“Softness you can feel, comfort you can count on, quality you can trust…YOU deserve the best.”

I chuckled to myself as I saw this.

An ad in a magazine? A commercial on TV? A radio ad? No to all.

A hospital gown? Yes…really!

Changing into one of the most uncomfortable articles of clothing–a hospital gown–for one of the most uncomfortable procedures for a woman–a mammogram–I read these words on the sealed package. The package also read, “We want you to have an outstanding patient experience, so please enjoy this gown that was chosen especially for you.”

I almost laughed out loud! I’ve never thought of a hospital gown as an article of clothing that makes me a fashionista, especially if you add the lovely non-skid socks that often accompany the gown. And comfort? You have to be a contortionist to reach the ties in the back of the gown to keep a large draft from exposing parts of your body that no one should see.

Unlike hospital gowns that vary from one facility to the next, you can count on God to bring you comfort, a soft landing, and His best when you need it.

When in pain, He sees you through the next hour…then the next.

When weary, He provides rest and His strength when you need to keep going.

When lonely, He surrounds you like a blanket with “softness you can feel.”

When you stumble, He will not let your foot slip.

Jesus is “softness you can feel, comfort you can count on, quality you can trust.” He also knows you deserve the best—His grace and mercy—and gives that freely.

This is Jackie…#livingwithhopethroughchronicillness

——————————————————————————–

Lord, I’m so grateful that you do not slumber and can be with me when I can’t sleep because of anxiety, pain, uncertainty, or loneliness. Please open my eyes and heart so I can see and feel your comfort at any hour of the day. Amen.


A question for you:

Where has God given you moments in the midst of your chronic illness and pain when you’ve smiled to yourself, chuckled, or laughed out loud? Please share in the comments below.

Invisible Illness Requires an Invisible Fight

Invisible Illness Requires an Invisible Fight

Well, I’ve been M.I.A. for quite awhile, and I apologize for that. Chronic illness can do that….rob us of things we enjoy. As I was reviewing some of my articles today, I came across an article I wrote for Invisible Illness Week in 2015, sharing my experience with three invisible illnesses. Since I haven’t posted on my blog for quite awhile, I thought this would be a good post to share with you. I hope it brings you hope and encouragement, and I hope to do that more frequently!

“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.

Rebuilding Resilience

Here is a great blog post on Rebuilding Resilience in adversity, including the symptoms and emotions that accompany chronic illness. It’s from a WordPress blog called “snowdroplets.”

I like this article because it lists specific things we can do to rebuild resilience in our lives and live at peace with our illnesses. In addition to the ideas listed by “snowdroplets,” I would add that my faith in Jesus Christ gives me courage and strength to move forward that I don’t have in my own human strength, and I am grateful for the grace and mercy God gives me every day.

snowdroplets

T3_27_Salix_babylonica_par_Pierre-Joseph_Redouté

Emotional resilience is the ability to adapt to stressful situations and to overcome adversity. I’m recently experiencing a recurrence of depression that had been well managed for many years. I’m grieving, living with health problems, and dealing with major stressors at home and work. I think it’s the combination of those factors all happening together that’s capsized me. I know that I’ll be okay eventually, but I’m finding the depression very hard to deal with. I feel my resilience has become exhausted.

I believe resilience can be restored and grown. Here are some commitments I’m making to myself based on common factors that build emotional resilience:

Resilience: I will make a conscious effort to cultivate resilience in myself and to acknowledge the resilience that I have.

Acceptance: I will accept these struggles, hard times, and losses. I will accept myself and those around me as we are. I will accept…

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Invisible Illness Awareness Week–Series of Articles on Endometriosis

Here is a post from guest blogger with excellent information and links about endometriosis!

She started a blog to help her in her journey through grief, infertility, fibromyalgia, endometriosis, migraines, PTSD, depression and, hopefully, to help others in similar struggles. She uses the name “snowdroplets” because she wants to convey both her sadness and hope. Snowdrop flowers are a symbol of hope. Some will bloom in winter. Droplets…as a symbol of tears. Also as cleansing water and the life-giving properties of rain. Put together… snowdroplets.

Please click on “snowdroplets” below to see her entire blog.

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As we kick off Invisible Illness Awareness Week, I was so happy to see The Guardian publish a whole series of articles on endometriosis today!! Endo is part of my #invisiblefight. It made me so very happy to see this awful illness receive this kind of attention and to see the discussions that these articles kicked off in the comments section. I hope this will help us to get more funds for much-needed research. Here are a few of the articles:

1) Endometriosis: the hidden suffering of millions of women revealed

Often dismissed as ‘women’s troubles’, endometriosis affects one woman in 10 of reproductive age, yet a lack of research and funding means sufferers can live in severe pain, unable to work or socialise…

http://www.theguardian.com/society/2015/sep/28/endometriosis-hidden-suffering-millions-women

2) Endometriosis: 20 things every woman (and every doctor) should know

For example: you do not have this disease because you failed to breed in your early 20s. And pregnancy is not a cure!

http://www.theguardian.com/society/2015/sep/28/endometriosis-20-things-every-woman-and-every-doctor-should-know

3) ‘I’m not a hypochondriac. I have a disease. All these things that are wrong with me are real, they are endometriosis’

http://www.theguardian.com/society/2015/sep/28/im-not-a-hypochondriac-i-have-a-disease-all-these-things-that-are-wrong-with-me-are-real-they-are-endometriosis

4) ‘The pain is paralyzing’: 30 women describe living with endometriosis

http://www.theguardian.com/society/ng-interactive/2015/sep/27/the-pain-is-paralysing-30-women-describe-living-with-endometriosis

5) Endometriosis: if your doctor isn’t taking you seriously, it’s time to find a new one

http://www.theguardian.com/commentisfree/2015/sep/29/if-your-doctor-isnt-taking-your-endometriosis-seriously-its-time-to-find-a-new-one

Thank you Guardian, for raising the profile of this disease!

Thank you, snowdroplets, for writing this blog post!

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.