What if I Had Cancer?

I have a confession to make: sometimes I wish I had cancer. How twisted is that? And what would possess me to say such a thing? Of course, although I've had close family members waste away and die from cancer, I've never experienced it myself. I know it's a horrible and serious disease that I wouldn't wish on my worst enemy. But as crazy as it sounds, there have been several times in my life that I've found myself being jealous of people with cancer. Shocking?

About a year before my health took a serious downward spiral, a friend from church was diagnosed with breast cancer. You would not believe the outpouring of love and support shown to her and her family by our church! People came over to clean, brought meals, and offered to take her to doctor appointments. I'll never forget the time she was sharing the stories about the support from our church family and, knowing my own chronic health struggles, innocently asked, "People come over and help you out too, right?" There certainly have been a couple of people that have helped out before. But as far as the kind of constant support she was getting? Not even close.

Several months later I was diagnosed with narcolepsy with cataplexy, and my cataplexy was so bad that I was constantly falling down all over the house. I couldn't prepare meals, shower, dress myself, or do any household chores on my own. We asked our church for some help and in addition to being told we lived too far away from the church for people to serve us, a church leader admonished us, "It's not always your turn to be helped; sometimes it's your turn to help." Huh?! Anyone who truly knows us would realize what an ignorant statement that was. And we'd been faithfully attending and serving in that church for over 3 years.

So why was my experience so different from my friend with cancer? I'm not entirely sure, and I'd love some feedback from you. But here's what I've come up with so far.

1. I'm not dying. People seem to equate cancer with dying. I guess they feel that since you may die, they should serve you while they can. On the other hand, the long-term, daily struggles in the life of someone with chronic illness are largely ignored. Maybe it seems like too long a commitment?

2. I seem like I can handle it. I've always been a strong, independent person. I am a problem-solver, and I don't give up easily. Maybe people think, "If anyone can work through this, she can."

3. I don't know how to ask for what I need. I've had a few people offer to help, but I feel badly asking for and even accepting help because of what I've experienced in the past. Who wants to be helped grudgingly, our out of a sense of duty? Or what if I ask for help this time, and then I really need help another time but I've used up my "Ask for Help Card"? After all, maybe it's not my turn to be helped.

All I know is, everyone has a limit, a breaking point. We live on the edge of ours all the time. After two months of a major health setback we are about to fall off at the moment. But is it safe to ask for help? Or do I suffer alone and hope for the best? What do YOU do when you need help getting through the struggles of life with chronic illness?

"Two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up. But pity anyone who falls and has no one to help them up." -Ecclesiastes 4:8-10

Where's Tonto?

"I feel like the Lone Ranger," my husband said to me last night, sighing as he made the difficult decision to go home for a good night's rest rather than sticking it out at the hospital for another night with me. Part of me was angry and hurt because I am afraid to stay at the hospital alone due to unpleasant past experiences. On the other hand, I recognized he was burned out physically and emotionally and needed his own bed. While I've been either hospitalized or bed-ridden for the past month, he's been trying to run our small business, take care of things at home, take care of me and/or stay by my side 24/7 in the hospital, plan and prepare most of Thanksgiving dinner, run all of our personal errands, and take over the few administrative duties I can still do for our business all on his own. So his "Lone Ranger" sentiment is understandable.

But even the Lone Ranger had a side-kick: Tonto, someone he could talk to along the trail and count on to have his back. Even his horse Silver would pitch in once in a while, dragging him to water when he'd been injured by an outlaw. Because we have no family living nearby, we recently moved to a new area of a large city and have visited our new church only a handful of times, and we have very few friends in our lives that are willing to roll up their sleeves and be involved in our often-dramatic lives, we have sadly grown quite used to bearing our burdens alone. We are thankful for God's grace, for each other, as well as long-distance family and friends who pray for us and encourage us via phone and internet. But sometimes you just need back-up. Like someone who will offer to drop off one of your diet-specific meals, take you to the doctor, or stop by and let the dogs out for some exercise while you're in the hospital.

Everyone is busy and everyone has less-complicated friendships to put their effort into. I know this. But everyone needs someone to talk to along the trail. Someone to count on to have your back. So for MY Lone Ranger's sake...where's Tonto? Heck...I'm sure he'd even settle for someone to just drag him to water.

Some thoughts and ideas I've shared before about being someone's "side-kick":
If We Are the Body
Get With the Program

Unlocked by Karen Kingsbury: A Book Review

Holden Harris is an autistic, high school senior whose father has given up on his ever being normal again, leaving his mother to deal with the day-to-day struggles of parenting a special-needs child. While Holden's mom Tracy holds on to hope and prays for a miracle to release her son from the prison of his autism, he is reunited with his childhood best friend Ella Reynolds, the popular daughter of Tracy's one-time closest friend, who abandoned Tracy shortly after Holden's diagnosis. Through Ella's friendship and Holden's love for music, miracles begin to happen not only for Holden, but also for his parents, his high school, and Ella's family as well.

So many topics that hit close to home for me were touched on in this riveting story. Karen Kingsbury demonstrates so clearly how those of us with chronic illness and our caretakers are often abandoned by our loved ones -often out of fear or not knowing how to deal with the situation- both physically and emotionally, just when we need them most. And the way people ignore, tease, and treat Holden differently because of his illness is sadly typical of how our culture regards those of us with disabilities. But Tracy Harris' strength in the midst of adversity and her fragile faith and hope in God is nothing short of inspiring. Likewise, the courage and compassion of young Ella to reach out to Holden is a testament to the power of one to make a difference. Unlocked is truly another in a long list of Kingsbury's "Life-Changing Fiction."

Disclosure of Material Connection: I received this book free from Zondervan as part of their book review bloggers program. I was not required to write a positive review. The opinions I have expressed are my own. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255 : “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

He Knows My Name

A Book "Experience" from Your Secret Name by Kary Oberbrunner

Every once in a while you read a book, and you just know that your life will never be the same. It feels like a personal message, meant just for you. And it becomes more than a book: it's an experience. I'd like to share my experience with you.

Each of us, whether consciously or unconsciously, is seeking our purpose in life - our identity. We want to know who we are and why our life matters in the grand scheme of things. As we go through life, we are given labels or Given Names that describe how others see us; and then we often spend the rest of our lives trying to live up to or to live down those names. But God has a Secret Name for each of us, a name that describes how He, our Creator, see us. Discovering our Secret Name is a journey that leads us to a deeper relationship with God and the beginning of truly understanding His plan for us.

As Author Kary Oberbrunner compared his journey to finding his Secret Name with the story of Jacob in the book of Genesis, I could not help but see similarities in my own life and realize I'd spent too long "playing the Name Game." I learned very early in my life that I could get recognition by being an achiever. The more awards I won, the more top grades I received in school, the more I improved my musical talents, the more people seemed to see me as a valuable person. This worked well for me until age 16 when I suddenly became "The Sick Girl," and I could no longer keep up with everyone's expectations of my being "Most Likely to Succeed." In my senior year of high school and through my freshman year of college I struggled just to get out of bed in the morning and stay awake through classes, but I did my best to put on a front that I had it all together as usual. But by the end of my freshman year I had begun to have major health problems and could no longer stay in school.

That's when I first noticed that I was becoming Invisible. I worked hard at improving my health and would have periods of remission where I would force myself to perform at work or at church so that I could have that feeling of being special and important. But inevitably my health would fail me again, and I would begin to feel Isolated and Abandoned by my friends and family. There were times I was out of commission for up to 6 months at a time, but I rarely had a phone call, email, or visit from any of those people I'd been trying so hard to impress. I felt Worthless and Forgotten, like I was a "Non-person." And as my health issues began to affect my weight, I no longer even recognized myself in the mirror. Pretty soon I was just a Fat, Sick, Depressed Person who meant very little to myself or anyone else. In the midst of a two-year downward spiral in my health and a series of events that left me feeling completely Invalidated by everyone in my life, I decided that my life was no longer worth living. And I attempted suicide.

Despite all the difficult circumstances over the past 17 years, I always felt God's presence and would see His hand at work in my life. I heard Him whisper loving assurances to me and would often picture Him holding me and singing over me, as in Zephaniah 3:17, "The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love,he will rejoice over you with singing." When Kary asked us at the end of the book to picture ourselves alone before God and to imagine what name He would call us, I immediately heard God say, "I see you. I hear you. I remember you. You are precious to me." I immediately was drawn back to Zephaniah 3:17 and discovered the name Zephaniah means "treasured by God." That's when He confirmed to me that the words I heard Him say all described me as His Treasure. When God looks at me, he values me as a precious treasure, of so great worth that He would never abandon, forget, or overlook me. And I don't have to earn a list of achievements to be treasured in His eyes.

"When I don't measure up to much in this life, I'm a Treasure in the arms of Christ." -From "Forgiven" by Sanctus Real

Disclosure of Material Connection: I received this book free from Zondervan as part of their book review bloggers program. I was not required to write a positive review. The opinions I have expressed are my own. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255 : “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

Pursued

"Why do I always have to be the one that pursues people? Sometimes I want to be pursued!" This was my outcry as I recently explained to a friend how sad and frustrating it can be trying to make friends with women when you have two "strikes" against you: 1. chronic illness and 2. no children. It took me years to figure out what the problem was; I kept wondering what I was doing wrong. Was I not friendly enough? Did I talk too much? Was I too self-centered? Should I have done more to reach out? But then I started to notice how women with children were always getting together with women who had children. They would go to the mall together, take the kids to the zoo, or invite them over for a lunch picnic. I tried to invite women to things that centered on their children, like a day at the beach with her kids. But I kept striking out. I figured that's just one club I will never be invited into.

But even women in different stages of life - single, married with no children, married with older or grown children - they didn't seem to connect with me either. I never got invites for a "girls' night out" or shopping trip. I even tried to have things like make-up or jewelry parties at my house so that I could interact with other women and get to know them better. It wasn't until a recent conversation with my Life Coach that my fears were confirmed: people don't want to be friends with someone who has chronic illness. It's too complicated and requires too much commitment and energy; so why bother? I realize it's more complicated to make plans with me because I need a lot of notice, don't have the stamina for a long day out, and require a lot of "paraphernalia" just to leave the house. But I just wish someone would think I was worth the extra effort.

Ironically, there have been a couple ladies who have reached out to me. But I soon learned they viewed me as a "ministry" or a "project" and not as a real friend. I guess they felt it was their duty to take me to doctor appointments or visit me in the hospital. But when it came time for the fun stuff, I never made their guest list. And those same women never seemed to have any problems of their own. They never asked me for help or prayer and never shared their frustrations about their marriage or finances. It started to feel very one-sided. I wanted to share in her life and be a friend to her. But you don't make friends with your project.

God has blessed me with a very small number of friends who have loved me through some of the most difficult times in my life. But most of these women live far away and can't interact with me in person. We talk on the phone, on Facebook, or by email, and they are a blessing in my life as I believe I am in theirs. But it's just not the same as having a day at the mall or getting mani-pedi's at the day spa. Maybe that's just too much commitment. I wish someone would think I was worth the trouble and pursue a real friendship with me.

"My friends and companions avoid me because of my wounds; my neighbors stay far away" - Psalm 38:11.

Easy Button - Continued

The whole object of my going up to Michigan to be with my family was to give my husband a break from being my full-time caregiver and to get a "jump-start" on my new "detox" program, right? It was supposed to be like the Easy Button. But I think we pressed the wrong button. Because shortly after I got to Michigan we found out that we were going to have to move.

Now, in order to understand the full impact this news had on us, you would have to know a few things: 1) We have moved A LOT in our ten years of marriage; probably more than most people move in a lifetime, and we were DONE with moving. 2)Our house and our property was our "dream house." We had always talked about living on 10 acres out in the country, but we thought we would have to find a piece of land and slowly build a home on it. But when we first drove up to this house, I just could not believe it; the perfect piece of land with a beautiful house already built on it! So we had poured our hearts into this home and this land. We painted most of the rooms and even painted a football field on the wall of the office, where we hung all of our football memorabilia. My husband laid a beautiful paver patio, with a walkway leading out to the pool we put in. He made me a prayer garden under a big tree in the front yard. We had stocked our pond with hundreds of fish and had been feeding them every night and watching them grow. My husband had made me a tree swing in the back yard. We had planted trees in memorial to the babies we had lost. We had fallen in love with our home and put down roots for the FIRST time in our marriage. This was devastating. 3)We had less than 3 weeks to pack up and move, and we had no where to move. 4)I was in no condition to pack, and I was 1000 miles away!

I think I cried for 48 hours straight. And I spent the next few weeks with a giant knot in my stomach and a sharp pain in my chest. I couldn't breathe. I couldn't think. I couldn't even pray. I could not fathom why God would allow this to happen to us in the midst of all of the other major things we were experiencing. And I remember thinking, "One of us is going to have a heart attack or a nervous breakdown." I honestly was afraid for my husband's emotional well-being; he'd already been at his breaking point before we got this latest news. I mean, that's why I was in Michigan in the first place. He was already overwhelmed, and the last thing he needed was to make the biggest move of our lives ALL BY HIMSELF. I shared my concerns with a couple of people from my church and even asked them to please check in with him because I was so concerned. NOT A SINGLE PERSON FROM OUR CHURCH CONTACTED EITHER OF US IN ANY WAY DURING THOSE 3 WEEKS THAT WE WERE GOING THROUGH SOME OF THE MOST DIFFICULT DAYS OF OUR LIVES. NOT ONE. This broke my heart even more.

To Be Continued...

Where's The Easy Button?

These past few months have been very hard. My health continued to get progressively worse, we were losing a lot of business and were still unable to pay ourselves a regular income all this year, and my poor husband just could not get a break from all the stress and responsibility of running a struggling business, being a caregiver to his wife, and basically taking care of everything that needs done to run a household. On top of all my other health problems, my doctors decided that I have a serious liver disease that was affecting my heart and would apparently eventually kill me. The worst part was that my husband and I were dealing with all of this alone. Despite moving our church membership to a church closer to home, we had not been able to connect with anyone in the church and still had no support system in dealing with all of this. We were burned out, stressed out, and just plain out of ideas on where to turn or what to do. And all I kept thinking about in my mind was, "We really need one of those 'Easy Buttons'!" You know: the ones from the office supply store commercial where you just press that big red Easy Button and help rains down upon you from the sky.

I felt like my husband I and were literally on fire in the middle of a crowd, and that we were jumping up and down hollering for help while everyone in the crowd just walked on by, talking and laughing and going about their business. We just felt like everything was falling apart and no help was in sight. I know that everyone deals with problems and struggles in life, but we were constantly being hit with one after the other. And then my health status went from "deteriorating" to "crisis" mode with the latest news about my liver and heart. And we knew something had to change drastically. So I made an executive decision that I was gonna get off as many pharmaceuticals as possible in order to give my liver a break, fire all my doctors except for my primary and my narcolepsy specialist, and I was going to detox my body and really focus on putting natural, healthy things in.

This type of program takes a lot of time, a lot of money, a lot of support and help, and a lot of energy. I certainly had the time, but none of the other things. And the way I was eating, which was the most important part of my "treamtent" (Phase One antifungal diet from knowthecause.com) required that almost everything be made "from scratch. That means nothing that comes in a can, a bottle, a package, or from a restaurant. I'm talking about the kind of cooking where you have to use every kitchen appliance, utensil, pot, and pan you own just to make one meal. I didn't mind the restrictions on eating so much, but I was literally to the point where I could barely stand up for more than a couple minutes at a time. There were times when I would start to black out whenever I stood up and I barely had enough strength to walk 10 feet. There were a few occasions where I barely made it into the kitchen, so weak and shaky that I had to just lie down on the kitchen floor for 15-20 minutes until I could get what I came in there for. And if I could muster the strength to prepare myself some kind of food, there was NO WAY I could clean up the mess I had made. So I would just have to leave it. Me. Leave a mess.

After coming home finding me lying on the floor, not having eaten or drank anything all day, my husband realized we couldn't do this all by ourselves anymore. So he asked my dad to drive 20 hours down from Michigan to take me up there for a few weeks so that my parents could help out. So I packed bags, boxes, and coolers full of food; all kinds of kitchen appliances and utensils; our puppy, his food, his kennel and other paraphernalia; and enough clothes and stuff to last a month. We had no idea when I would be able to come back home. And it was a tearful, anxious goodbye.

To Be Continued...

Home Alone

Ok. I'll be honest. When my husband told me that he was leaving for 4 days to go out of town to take a class, I panicked. It's not like I'm afraid of the boogeyman or something. I mean, I know how to shoot a gun, and I'm pretty feisty. I pity the fool that would try to break into my house or attack me, 'cuz I might be going down, but I'm taking him with me or at least doing plenty of damage along the way. What struck fear into my gizzard was that I don't get around so well sometimes, I cannot drive, we live in the middle of Egypt, and I actually fall down pretty often. Literally. And recently, my primary doctor decided to play musical drugs and switch up a couple of my medicines, which really wreaked havoc on my body. I ended up falling down 3 times that week, and I have the bruises and swelling to prove it. (Let me just say here that falling off the toilet and landing on the hard tile floor face-first is just as pleasant as it sounds).

If my regular readers will recall from a previous post (My Brother Was My Keeper), I didn't fare so well the last time my husband left for a few days. For some reason, it seems like all of Hades breaks loose when he's gone. But at least last time my brother was here with me; this time, he had to go take the class too. Now, they did ask me if I wanted to go on the trip. And who could pass up the chance to sit in a hotel room all day while they're in class? I thought about it, but then we'd have to find an actual competent person to housesit with the dogs. (Preferably someone who won't trash my house and kill my pets and my plants. And that ain't easy to find, people). So then I tried to find someone to stay with me, at least at night. No luck there either. Surprisingly, most people I know have an actual life.

So, with dread in my heart and a freezer full of TV dinners, I said good-bye to my guys and prepared to hunker down at the ol' homestead. Aside from the fact that I absolutely cannot sleep when my husband is away, I did ok the first day. But the next day was a different story. Digestive issues that I dare not elaborate on plagued me on Day 2 of this saga...and I do mean plagued. I was just flat-out one sick puppy. I had the worst stomach cramps ever created; I was shaking really bad, blacking out, and breaking out into a major sweat. It felt like I was just going to die. And it wouldn't stop. When I get sick or upset, my cataplexy (loss of muscle tone) really kicks in too, so it wasn't easy to keep getting up to go to the bathroom or get stuff I needed. So...I was really getting dehydrated quickly. I gathered up enough strength to go out to the garage to get a supply of Propel, which is my "go to" beverage when I start to dehydrate, but that was truly about all I could manage. I'm texting my hubby in church, telling him I am in dire straights. He tries to reassure me that he can send someone out to check on me or even come home if I need him to. It was truly awful.

But I made it. A friend called that night and got my mind off how horrible I felt. She also promised to come by the next afternoon to visit and bring me "sick food." Thank God for friends like that! Really. You know the kind I'm talking about: the person whose name pops into your head when you really need some help and you know they'll drop everything and be there for you. People like that are few and far between. I really hope I'm that kind of friend. It was such a blessing to have her come by and bring me some things I could eat as I slowly started to try to eat soft foods to make sure my system could handle food again. And I'm doing much better today, although I'm gonna stick to the soft foods for another day, just in case.

I've already told my husband that he is forbidden to go away ever again. At least not without hiring a babysitter for me! I'm so glad he's coming home tonight. I really could use a good night of sleep and a HUGE hug from the best caretaker in the world (next to my mom, of course). I wasn't very good at being Home Alone...and I pray there will not be a sequel.