Showing posts with label Jesus. Show all posts
Showing posts with label Jesus. Show all posts

Monday, December 22, 2014

True Color Me: Honest Revelations Of This Rugged Lyme Journey

I wrote much of this several months ago (August) but then went into a stretch of feeling physically worse and had to put it on hold. I'm feeling better now and have since finished this. I almost hit publish a dozen times but continually held back for different reasons. There are so many deep components to this complex disease that I often refrain from writing about it because I feel I can never fully address them all. But I've come to the conclusion that it just isn't possible. No matter how much anyone writes or speaks about this, there will always be something else or something more. Always. However, not writing doesn't accomplish anything either. I've also held back because I wondered what people would think or say after reading it. But they haven't had to live these past 20 years of my life either - I have. And factoring my faith into the whole mix brings yet another dimension into play. With that in mind, I've tried to express some of the honest truths of this rugged Lyme journey I have experienced while balancing it with the hope of that faith. Why I suddenly feel compelled to post this now - days from Christmas - is beyond me. But I do, and it needs to be said, for myself, and perhaps for everyone living with Lyme disease. - Michelle

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I've discovered something over the past twenty years of this journey.

We don't always want the truth of our stories to be the truth of our stories. Because the truth of ours stories is often painful, ugly, and messy. Living that actual truth out is not easy, but it is our reality, and we can't pretend like it's something that it's not.

There are certainly good parts of our stories, too; beautiful, wonderful parts. Parts that bring us joy and blessings. But it's those other parts that are so hard to deal with. And yet, accepting the whole truth of our lives is important.

Anyone who knows me knows I am a woman of faith and hope. I absolutely believe God works in deep places and through ways we can't always see or understand. In the meantime, however, living in reality is unavoidable. It doesn't mean we aren't hoping, praying, and working for something better, we are, but we can't dismiss or trivialize the difficult, unpleasant parts of our lives either.

Feeling the need to hide the truth of what we go through because others think we should be positive and "not talk like that" is ludicrous. How ridiculous is it that we must explain and defend ourselves to people who think they know everything about this but have never endured a day of living with a debilitating chronic illness, much less years? That some people actually believe Lyme or other tick-borne infections couldn't possibly make someone that sick is really unbelievable to me.

That's really what all this is about. 

Sharing more of the truth of my story. 

The truth I live; the truth many do.

I always try to be honest about living with Lyme, the many years I was misdiagnosed, and the ongoing repercussions. By sharing this, I hope to help bring better awareness and understanding. I also want to help advocate for the desperately needed changes in how Lyme disease is handled overall.

Having said that, I don't always go into a lot of detail about my ongoing health struggles, or what it's really like on a daily basis. Believe me, it looks a lot different on this side of the screen. And while it is wise to use discretion about how much personal information we share, I feel there are times it's needed and helpful to be more forthcoming about this disease and how it affects real lives.

Honestly, this has been burning a hole in me for a long time now. I need to write this for myself. I am writing this for myself. But I hope it can help someone else too.

I truly believe there is a higher purpose in life, but I do want to share some truths about this long, hard journey. I wish I could somehow reveal everything that has happened, but it just isn't possible. I'd have to write a book or two. Maybe three. 

Instead, I'll share this. So please read on, but read on knowing this has been my life for the past twenty years. It's honest. It's real. And it's from straight the heart and perhaps the gut a bit too.

After twenty years, I sometimes feel lost in this ongoing battle. Many days have been a struggle to do more than just exist. At times, it feels like all the color of life gets sucked right out, leaving everything in dull shades of gray. Leaving me in the gray. It can be a challenge to hold onto your identity.

Clearly, anyone who is chronically ill has unique daily struggles. We have regular hardships and frustrations that no one else sees or understands except for those with us every day; they go through this too. And while there are many different kinds of suffering, there's something uniquely difficult about physical suffering.

When Lyme disease is chronic or long-term, treatment is usually intricate and time-consuming because so much is involved. It's more of a disease complex, and the many chronic infections and inflammation involved take a significant toil.

There are so many things that break down in the body over time. It's like a chain reaction; one thing leads to another and then another and so on. It's something no one can understand unless you've experienced it for yourself, which is another reason to share our stories and possibly save someone else from the long years of suffering so many of us have endured because of misdiagnosis or delayed treatment.

Like many I know with Lyme, I've been much sicker than most people get or understand; being misdiagnosed for so long certainly didn't help. As I said, none of us can fully grasp what we've never experienced before, but I'm telling you it's really hard to be so sick for so long and to have your life completely turned upside down by it; to lose so much along the way and travel a path that is laborious, lonely, and so often misunderstood. It's also hard to fight people's insensitivities and judgments, even within the medical community, even within the church.

Seriously, you wouldn't believe some of the things people say to someone who is chronically ill. Or some of the "advice" they feel the need to give. Unless you've been there and done that, you honestly cannot know the depths of this hardship. Even then, we all have a unique experience because we are uniquely different people with unique biology. 

My advice is, please don't talk about things you really don't understand. And while I'm on the topic, let me say that making someone whose chronically ill feel like they're not doing enough or that they don't have enough faith to get well is cruel. Stop it.

It is true I am better in some ways, and I'm really grateful for that. However, I'm still very unwell. That's often hard for people to hear and fully comprehend. So I want to add some personal perspective to it.

My doctor and I sometimes use a scale to help us both measure and convey where we believe my health is overall. On this scale of 1-10, with 1 being the WORST and 10 being the BEST, I have spent a great many years at 1 and 2 - my absolute worst years. In hindsight, I wonder how I really did endure it all.

Over the past few years, I've been at a 3 but would often fall back to 2 while occasionally falling up to 4. But I could only maintain a 3.

These past couple of years, I've been at a more consistent 4. And while I am glad for it, and while 4 is certainly better than 1 or 2, it's still a far stone's throw away from 10. I have fallen back to a 3 and am also having some 2-ish days again as I write this. So trust me when I say that I didn't just sit down and throw these words together. I've been working on this for a while.

On a majority of days, I look nothing like my profile pictures on social media. I usually look much worse and often feel worse too. I sometimes use editing programs or filters to enhance my photos (as a photographer, I love using various editing tools and apps, and I love black and white photography). I also sometimes edit my profile pics. I know this is my choice, but it's honestly because I only want a decent-looking picture.

But there is a line, and I find myself feeling compelled to be more real about that line and the truth of my life. We live in a culture that thrives so much on looking good at any expense; it's sending a dangerous message. It's not reality. And it's certainly not reality living with Lyme disease.

The photos below from September show an edited black and white (photo 1) picture of me versus the original true-color picture (photo 2). The black and white version made me look better, but the color photo reveals the truth. Or at least as much as it could capture.

And the truth of this photo is that I had just had blood work done in preparation for a new phase of Lyme treatment. My doctor ordered labs to see how things were functioning in my body before taking this next step. And because there were certain things she's been concerned about, me too. And although the weather was really nice that day, and it felt good to be out, I wasn't feeling very well. I was really fatigued and running a fever, among other things. 

After getting labs done, my Mom and I had lunch in the car. We watched this crazy-hyper squirrel run around the parking lot we were in, devouring nuts like they were going out of style, which made us laugh. We had some really good coffee too. This lunchtime in the car was the highlight of our day. Simple joys really do mean the most.

We ate in the car because I didn't feel like getting out - again. We also ran by my doctor's office to pick up something I needed and then stopped for a few groceries on the way home. I waited in the car (this is where I am in the photos below). I was feeling sort of sad and weary, thinking about how long I've been sick, how physically tired I was feeling, what my labs would show, and how unending this all seemed.

So why am I telling you this?

Because this was the truth of that moment. Because that moment reflects the bigger truth I've lived with for twenty years - the truth I still live every day. And because I'm showing you more of the true color me, and not just the black and white edited version.

PHOTO 1 EDITED BLACK AND WHITE ME


PHOTO 2 TRUE COLOR ME

I am still in a wheelchair and have been for seventeen long years. I don't just use it occasionally or whenever I go out. I am in it. Every. Single. Day.

My gait and balance have been greatly affected by this. You don't realize how complexed the biomechanics of walking are until you can't do it anymore.

Let me just say it's extremely difficult to roll around when not feeling well, severely fatigued, or in pain. And thick carpet is not my friend. Neither is gravel. There are never, ever, enough disabled parking spaces in any given parking lot. Not anywhere. Nor are there enough public sidewalk ramps. And just because a building or a restroom has the little blue handicap sign on their wall, and just because somebody throws down a slab of cement or something resembling a ramp to get in the door, doesn't mean it's truly accessible.

This is precisely what one of my physical therapists drilled into my head years ago, as well as the wheelchair skills I had to learn and adequately perform before she would officially release me. She let me know in a very candid way that not everybody would run to help me when out in public, nor would everybody care. She wanted to be sure I could take care of me and get where I needed to go.

She was right. And while I'm never out alone, I've seen and experienced a hundred times over what she alluded to. It's sad but true. However, I am so blessed to have my mother, who has been and still is my caregiver and biggest supporter [throughout this entire ordeal]. We have creatively maneuvered many a ramp, sidewalk, doorway, and parking space together over the years. Trust me, every person in a wheelchair could tell you stories.

I was in physical therapy in the late '90s and early 2K's - for over five straight years. This was during the sixteen-year period I was misdiagnosed, long before we ever knew I had Lyme disease.

I spent three of those years in therapy at Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky (in and outpatient). I used to have outpatient PT three times a week and would fall asleep on the way home because I was so utterly exhausted. My Mom was always deeply concerned about this like it wasn't normal to be that wiped out after an hour of physical therapy.

And it wasn't normal. It was an indication of what we didn't yet know.

We'd get home early in the afternoon, and I would go straight to bed and crash hard. Sometimes, I'd sleep until the following day. Other times, I'd sleep until 7 or 8 o'clock that night, get up and eat some dinner, and then go right back to bed, not getting up again until morning. Eventually, I had to quit physical therapy altogether because it was just too taxing for my body.

I also used to have a lot of major vertigo. It was absolutely awful to go through. Another one of those things no one can understand unless they've experienced it themselves. I might have an occasional flare-up, but it's nothing at all like it used to be. All I can say is, THANK GOD FOR THAT!!

As a result of much treatment and hard work, especially over these past two to three years, my balance and movement are way better than they've been in a very long time; actually, since 1997, which was the year I first went into a chair. And while I still do not have a normal gait (walking) yet, and while I am still in a wheelchair, these are two of my most significant improvements.

I can now walk sideways or sidestep around my bed, down the length of the kitchen counter, along the railing of our deck, etc. I do need something to hold to or have contact with. Some days I can go longer and further, and some days I cannot because I don't have the energy or my legs feel too weak.

The fact that I've been able to maintain this improvement is big. Really big. I've experienced improvements in other areas before but couldn't hold onto or sustain them, or they'd just fluctuate. So this is very encouraging. The joy of moving in this way and being more solidly balanced is almost hard to describe. It is a freedom I've not had in years. And it's a significant improvement.

I'm pretty much home the majority of the time. I mostly only get out for my doctor appointments, lab work, or other pressing or necessary matters. If I'm having a better day, I might feel like going out for lunch, but not often. I am also careful of getting out around a lot of people, which my doctor has cautioned me about. Especially when "stuff" is going around.

I was bedridden for many years. Long stretches of days and weeks at a time with very little reprieve in between. It didn't start out that way, but that's exactly what it turned into over time. This is better also, but I still have days when I'm feeling bad or more deeply fatigued, and I'm right back there. I've been having some more of those days again. However, I am happy it's not as bad as it used to be.

It's been odd watching my friends and peers move on in theirs lives. It's usually the normal progression of getting older, furthering careers, buying houses, perhaps getting married, starting families, raising kids, doing life. A few are even becoming grandparents. 

Believe me, I know no one has a perfect life, and I want them to be successful and happy, but I cannot relate to those things. My adult life has been nothing like that. Mine has been filled with deep ongoing sickness, numerous doctors visits, lab work, tests, therapies, and the continual quest to find answers and get well.

There have also been many rugged places with my faith in this journey.

I've always tried to be honest about this, too, so let me tell you something I've learned.

Trusting God and praising Him in the storm is not always easy to do, especially when the storm has raged on for so long. In fact, it's often the last thing you want to do or feel like doing. Many people give a lot of lip service to this when things are going easy and smooth, but when things get really tough and uncertain, when the rubber actually meets the road, it's a whole different story. This is why no one should criticize or judge what they've never had to live with or go through.

I learned a long time ago I can still trust Him while not understanding Him, which is precisely what He's after. He is far more concerned with our trust than our always understanding Him. As long as we live, we'll never fully understand everything. Trust is big with Him. Still, I know it's not always so easy. But something does happen when you choose to trust Him anyway, despite all the reasons you have not to.

When bad things happen to us or someone we love, it's normal to question or struggle with our faith. We often beat ourselves up for this, but if our faith means anything at all, it will ultimately endure our deepest struggles, questions, and even our doubts. How can our faith mean anything if it's never challenged?

On the flip side of this, I also believe that in our desire to be faithful to Him, we shouldn't forget to be real too. God's not into fake or plastic living. Neither am I.

I don't know about you, but I don't need some fluffy cotton candy version when it comes to genuine faith. I don't need a looks-good-on-the-outside-but-has-no-real-substance-on-the-inside version. And I certainly don't need a hyperchurchy version, meaning it's all good behind the four walls but falls apart otherwise.

None of these "versions" have enough authenticity for me. None of them have the true empowerment I need to help me through my real life.

I need the solid, honest kind that helps hold you through the worst storms of life. The kind that keeps breathing through the ups and the downs. A faith that's as much alive in the valley and desert as it is on the mountaintop, which usually means you'll wrestle with it. 

And my faith has certainly been worked over. A lot. We've had some big fights. It's been banged up and bruised. It has scars, but it's real and hearty. And we've gotten to know each other better because we've grappled so much. While it's been excruciating a lot of the time (like pull-your-hair-outta-your-head difficult), it has brought me into deeper, sweeter places with Jesus.

Real places.
Sustaining places.
Colorful places.

These real, sustaining, colorful places, and the struggle of the past twenty years, have taught me more than anything else in my entire life. And while it has undoubtedly come with a cost, I honestly wouldn't trade this closeness with Him for anything.

I never thought or expected my life would look like it does. Some parts have been so difficult, I really have no words for them. But I also know it's not the end of my story either.

Still, I won't deny what I'm going through or how hard it's been. Ironically, and perhaps it's more accurate to call it a divine irony, I feel my healing, recovery, and destiny are all tied into this path. So what other way is there to get to it but go through it?

At times I have felt the true color me has challenged some people's personal beliefs and theology. I've even felt some prefer the black and white edited version of me because it's easier for them to deal with and make sense of. And I think this is really a reflection of our culture as a whole.

Society likes pretty pictures and pretty stories, often at the expense of truth. But here's the problem - that's not always reality.

Sometimes the stories are perfectly wonderful and lovely, perhaps even amazing and beyond what we could ever dream of or hope for. Many times, they are not.

We don't live in a fairy tale land where everything is always golden and ideal. We live in a real-world, with real people who have real problems. And we all need real help for our real lives from a real God.

I believe one of the most courageous things a person can do is to stand in the truth of their real-life story; the good, the bad, the beautiful, and the ugly.

I'm not saying we never progress into greater or better things or learn to walk in deeper faith. And I'm certainly not dismissing how God can bring change, healing, and restoration. I am saying living authentically is essential and necessary. 

And that's what this whole post is really about - living life in true color if you will.

True color me reflects the whole truth of my life, every part of it. True color me is still not well and still sits in a wheelchair. And there are days I still really struggle, even after all these years of various treatment protocols, therapies, healthy eating, prayers, ministry, and obedience. 

Yet true color me is also filled with greater wisdom and understanding. True color me has tougher skin and a braver heart. True color me is filled with deeper compassion, and a more vital inner beauty, trust, and hope, even for a better future.

True color me is filled with a faith that doesn't dismiss my suffering but helps sustain me through it. It's a tested faith that doesn't collapse when it gets too hard or even dark but knows how to hang in for the long haul and be salt and light. It's a faith that can withstand challenge and hardship while holding me in love, truth, and grace.

It's a genuine faith that knows my name. 

And I know His.  

Michelle Holderman
Copyright © 2014 

Saturday, August 10, 2013

H.O.P.E.


 1. Hope [ho'hp] transitive verb: 
a) to desire with expectation of obtainment;
b) to expect with confidence: trust; rely

2. Hope [ho'hp] noun:
a) desire accompanied by expectation of or belief in fulfillment; expectation of success 
b) the feeling that what is wanted can be had or that events will turn out for the best
c) someone or something on which hopes are centered
(Dictionary.com and Merriam-Webster)

Hope doesn't necessarily exist apart from struggle. In fact, there's usually a battle raging. What hope does is to remind us there is the possibility of something better. Hope speaks a continual, "Don't quit." It 's that ever present whisper in our hearts that says, "It's not over. You can do this." It's the proverbial Rocky music in our ears. 

And there is a greater hope as well. Romans 5 hope. Colossians 1 hope. It's the ultimate hope in my life. It's what keeps me going in this long, difficult journey.

~ Michelle

"While there is life there is hope - and while there is hope there is life." 
- E.E. Holmes

Tuesday, September 14, 2010

30 Things About My Illness You May Not Know

I'm joining a wonderful blogging campaign for National Invisible Chronic Illness Awareness Week, sponsored by Rest Ministries. I appreciate you taking the time to read my blog. If you'd like to know more, please check out: http://www.invisibleillness.com/.

1. I live with chronic Lyme disease, but this answer did not come easily. Can anybody say diagnosis nightmare?! Like many others, I've been through the gamut of diagnoses over the years. To better understand my personal story, you might consider reading the post preceding this one entitled, Journeying Through Chronic Illness. 

2. I've actually had symptoms since 1992. But everything escalated after having oral surgery in 1994.

3. I was 24 when I first became ill. I'm now 40.

4. The biggest adjustment I've had to make is learning how to live with and manage physical limitations.

5. Most people assume if I'm out, I must be doing fine. That's not true. I do have some days I feel relatively good, but it can change in a matter of hours or from day to day. Most days, I don't feel well at all, and a lot of days are just plain bad. I'm hoping this will change as we work through a new treatment protocol I'm on, especially since we now know what's really been going on all this time!

6. If I'm not feeling well when I first wake up, I know it's going to be a bad day. If I am feeling reasonably good, however, mornings can be the time of day when I have more energy than afternoons. I tend to get more fatigued and run a fever as the day goes on.

7. My favorite medical TV shows are ER, China Beach, Emergency, and Hawthorne.

8. An electronic gadget I couldn't live without is my iPhone. I especially like it when I'm not feeling well. I can listen to music and access email, FB, Twitter, and other apps, all from bed. Even though I use my laptop regularly, it's just too big to deal with when I'm feeling bad. That's when my iPhone really makes the difference for me.

9. Sometimes, people just don't understand. And sometimes, people say the wrong things. These are two things I've had to both accept and make peace with. And while this is true of life in general, it is amplified in chronic illness. This was much more difficult early on in my illness, but there are still those occasions when it stings a bit. I truly believe most people mean well; they just don't understand the complexity of living with chronic illness, pain, and/or disability.

10. The number of pills I take daily varies. I use homeopathic medicines, which are liquid, so I add so many drops to my water and drink or take them straight by mouth. My herbal and nutritional supplements vary. Some are liquid also. Presently, I'm taking 4 pills a day.

11. I like and benefit very much from using alternative medicine and therapies. I spent several years using prescription medications but have found a great deal of help through natural and alternative means. I believe everyone has to find what they feel is best for themselves and certainly what works. My physician is a Naturopathic Doctor. I have Massage Therapy and other bodywork regularly. Epsom Salt and aromatherapy baths can help ease muscle and joint pain and greatly help with detoxification. I've also found eating whole nutrition is extremely important. So I eat a very healthy diet, which initially stemmed out of necessity, but I feel better when eating whole, nutritious foods.

12. My wheelchair is the most tangible, visible part of my illness, and that's what people always go to. But it certainly isn't the only part. Clearly, not being able to walk is a huge deal! However, it is one obvious reflection of many invisible aspects of this illness. I pray for the day, and this is my faith speaking when I am well and will no longer need to use this wheelchair. I'll be thrilled to become totally invisible in that sense!

13. I haven't been able to work in my chosen profession for many years now. It took me quite a while to accept that. You know - one more thing I had to give up. But I truly believe God has other plans for me.

14. People would probably be surprised to know that I play the drums :)

15. Some of the hardest things to accept about this new reality have been the many losses and limitations with chronic illness and disability.

16. My illness actually opened the door for me to speak to nursing and radiology students at a local college about my perspective as a healthcare professional and a patient. Based on my own experiences, I created scenarios for the students to assess how they would potentially respond. We then had open discussions about it, and many of them began to share their own personal stories. It was a really great experience for me, and I hope it was for them as well.

17. I am thankful for the good days or moments I have, even if they are few and far between. Living with a chronic illness and disability has undoubtedly brought a whole new and unique perspective of life; it has been a teacher in many ways.

18. Some of the things I really miss doing since being chronically ill is having the stamina and energy to go out shopping with my Mom and run around all day, i.e., shopping, having lunch, shopping some more, having coffee, etc. I miss going on vacations too, which require energy and money. Mostly it's the simpler things I miss, like taking a walk in the woods, especially in the fall. Being able to walk and run with my nephews. Or being able to indulge in something sweet without repercussions.

19. It's difficult to fully express the deep struggles of living life with a chronic illness. One mourns for the physical losses that accompany disease and the loss of friends, jobs, lifestyles, etc. One thing that was really hard for me to give up was my total independence. Thankfully, I'm still independent in some ways. This has come through making our home more accessible and by investing a great deal of hard work into physical therapy, being devoted to working with my doctor, and sticking to my diet and treatment regiment. It's certainly not been easy, and it's certainly not been fun, but through it all, I've learned a lot about trusting God and how to depend on Him and others.

20. A new and serious hobby I have taken up since my illness is photography. And interestingly, I've found the view of the world around me is literally different because of my being forced to slow down and sit down. I catch things around me that others can sometimes miss.

21. If I could have one day of feeling normal again, I would want to spend it with my family enjoying copious amounts of carefree fun at the beach. I want to run with my nephews into the ocean! If not at the beach, then at home grilling out, riding four-wheelers, walking in the woods, running and playing with my nephews, building a bonfire, roasting marshmallows to make smores, etc. I would truly savor having an abundance of energy, feeling good, and being able to move around freely without limitation.

22. My illness has taught me much about patience and perseverance. I've learned a great deal about God, trusting Him, and truly learning to walk by faith and not sight. Not an easy lesson. I've learned a lot about myself and about health and nutrition. I've learned to recognize and appreciate small joys in life; they really do keep you going. I've learned carrying a dream in your heart is essential to survival. And I've also learned the one thing this illness cannot take away from me is my identity in Christ.

23. One frustrating thing is the many pat responses I've gotten from people." But you look good!" or "It can always be worse, can't it?" or "If anybody could do this, it's you." I realize others cannot automatically know the ins and outs of living daily with a chronic illness and disability. Still, it can be frustrating to be told how good I look when I've just come out of 3 weeks of feeling my absolute worst. And clearly, I know things can always be worse, but it doesn't change my present circumstances. As for the last one, what choice do I have? I find those who have understanding usually do so because of dealing with an illness themselves or having experienced it through someone they love.

24. I like when people will address my illness and disability and not talk around it. I find children are refreshingly open and honest about such things. I welcome their curiosity and questions. My nephews have asked me many questions about why I can't walk and why I have to rest. They're certainly not intimated by a wheelchair. I also like when people will look me in the eye and acknowledge me. There have been many times over the years when I've been out in public and had someone turn away from me or direct conversation to my mother or whoever I was with. I now realize that has more to do with them than with me. Still, it doesn't feel very good. Conversely, there have been those who have gone out of their way to hold open a door, say hello, offer a smile, or strike up a conversation. So there really are some kind, thoughtful people in the world, and they far outweigh those who are not.

25. Some of my favorite quotes and/or scriptures that get me through tough times are: 

Psalm 34:18 "The Lord is close to the brokenhearted and saves those who are crushed in spirit" (I find a lot of solace in reading the Book of Psalms).

"...Being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus." Philippians 1:6

"Trust in the Lord with all your heart; don't lean unto your own understanding. In all your ways, acknowledge Him, and He will direct your path." Proverbs 3:5-6

"So do not be afraid, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

"Hope knows that if great trials are avoided, great deeds remain undone, and the possibility of growth into greatness is aborted." - Brennan Manning.

"Never, never, never give up." - Winston Churchill.

"Sometimes God allows what He hates to accomplish what He loves." - Joni Eareckson Tada.

"It's not whether you get knocked down; it's whether you get up that matters." - Vince Lombardi.

26. If someone has been diagnosed with a chronic illness, I'd like to tell them to not compare where they are and how they feel with someone else; we all deal with this differently. I'd say it's alright to feel those roller-coaster emotions - scream, have a good cry, talk to a trusted friend, rip the newspaper to shreds or blast the music really loud; whatever helps. I would tell them to look to God for strength and hope. I'd also add that questions or struggles with faith are common in chronic illness, but they do not necessarily equal a loss of faith; it's okay to work through that. Don't be afraid or embarrassed to reach out and seek help when you need it. And I'd also say find a great online support system or resource like Rest Ministries; it can make a huge difference to connect with others who relate to what you're going through.

27. One surprising thing I've learned is that chronic illness is not simply black or white but many shades of gray in diagnosing, treating and living with it. And it affects the whole family, emotionally and financially. My brother once said to me, "Michelle, while this is physically taking place in your body, it's happening to all of us." I've never forgotten that. And it's true.

28. Someone doing something nice for you means a lot anytime, but that's certainly true when you're chronically ill. My Mom, my caregiver, does nice things for me regularly; they're just too numerous to mention.

Several years ago, before having to quit work, a close friend of mine came to my house and wrapped ALL of my Christmas presents for me because I was not feeling well enough to do it. Very nice.

A sweet friend of my grandmother's use to send me notes and cards every week. She did this for many years before she passed away. She would often just write something very simple but meaningful. Very nice. And speaking of my grandmother, she, like my mother, did so many nice things for me while she was alive. She would often make me homemade meals and goodies that only she could. Mostly, she and my grandfather would come to visit me every Sunday afternoon. I enjoyed spending that time with them. I love and miss her very much!

29. I'm involved with Invisible Chronic Illness Week because I want to put a face to what living life chronically ill is really like and help others understand that a lot of the suffering of chronic illness and pain is not often visible to others. Also, I want to share hope and support with those living with chronic illness and/or pain. Even though many days are hard, and even though some days are beyond brutal, you can get through it with God's help and the love and support of family and friends.

30. The fact that you took the time to read this list makes me feel you're interested and care. And for that, I say a deeply heartfelt thank you!