30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Narcolepsy with Cataplexy
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: 1993
4. The biggest adjustment I’ve had to make is: to let things go. I can't do everything I want to do, and I can't do it perfectly. I have learned I have limitations.
5. Most people assume: I'm lazy or just enjoy sleeping a lot
6. The hardest part about mornings are: getting ready to leave the house is a HUGE undertaking. I have to take a break after every step. Take a shower; take a break. Get dressed; take a break.
7. My favorite medical TV show is: Mystery Diagnosis
8. A gadget I couldn’t live without is: motorized wheelchair
9. The hardest part about nights is: getting myself ready to go to sleep. I have to take a bunch of medicine, set two alarms so I can wake up in 4 hrs to take my second dose of meds, clean my CPAP mask and put water in the machine, plus all the normal stuff like brushing my teeth, etc. When I'm so tired I can hardly stand up, it's a nightmare.
10. Each day I take 21 pills & vitamins.
11. Regarding alternative treatments I: have found that they cannot be used to the exclusion of traditional treatments and vice versa.
12. If I had to choose between an invisible illness or visible I would choose: visible because then I wouldn't have to explain myself all the time.
13. Regarding working and career: I can NEVER work a normal 9-5 job because I don't have the stamina and can't be depended on to be somewhere at a certain time. I work from home and help with my husband's business as much as I can.
14. People would be surprised to know: how much I struggle with feeling inadequate and unproductive
15. The hardest thing to accept about my new reality has been: having to admit I can't do things and having to depend on others to help
16. Something I never thought I could do with my illness that I did was: graduate college. It took me until I was 29, and I dropped out, dropped classes, and asked for extensions more times that I can count. But I did it!
17. The commercials about my illness: what commercials? Most doctors don't even know what cataplexy is. I carry info sheets with me wherever I go in case I have an attack.
18. Something I really miss doing since I was diagnosed is: DRIVING!!!
19. It was really hard to have to give up: singing in the choir and singing specials at church
20. A new hobby I have taken up since my diagnosis is: bird watching
21. If I could have one day of feeling normal again I would: not know where to begin. It's been 16 years since I've felt "normal," so I don't know if I would recognize it if it actually happened.
22. My illness has taught me: to be compassionate and empathetic toward others
23. Want to know a secret? One thing people say that gets under my skin is: "It must be nice to stay home and relax all day!"
24. But I love it when people: offer to pick things up from the store for me or take me out for an afternoon
25. My favorite motto, scripture, quote that gets me through tough times is: Romans 5:3-5 "Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.
26. When someone is diagnosed I’d like to tell them: it's normal to grieve over the loss of your health and your dreams and goals for your life. Don't worry about putting on a brave front. God sees your pain; don't be afraid to let others see it so they can love you and hurt with you.
27. Something that has surprised me about living with an illness is: no one will ever understand completely what it is like for me to live with my illness, so I cannot expect that from people
28. The nicest thing someone did for me when I wasn’t feeling well was: came over and cleaned my house and didn't make me feel bad about how dirty some things were
29. I’m involved with Invisible Illness Week because: there are so many hurting people that are feeling alone in their illness, but spreading awareness can bring hope to those people like it brought hope to me.
30. The fact that you read this list makes me feel: that you love me enough to learn more about my struggles.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

The Heart of the Matter

Just when I thought I was getting my health on the right track, I suddenly began having problems with my heart. I'll be honest: medical issues involving the heart are pretty scary to me. Both of my grandfathers died of heart attacks and one spent most of his life disabled due to heart disease. Aside from smoking, I have almost every risk factor for heart disease. I should have seen this coming, but I didn't.

It all started a couple weeks ago after my doctor decided to have me try a new narcolepsy medication, Nuvigil, which helps to combat the excessive daytime sleepiness which accompanies narcolepsy. A few days after starting the new medicine, I began having chest pains, my heart was racing, and I was very weak. My doctor did an EKG and made me chew up an extra 50mg of beta blocker, which he prescribed as an addition to my current dose of 100mg. My heart rate went down a bit, but I had the weakness and chest pain on and off for the next several days. My blood pressure, however, really seemed to go down (and it wasn't high to start with). The following Sunday I blacked out and landed face down on the cement front porch, scraping my arm pretty badly. Needless to say, I basically spent the next week lying down.

My doctor said he wanted me to get in to see a heart specialist "right away," which is apparently code for "weeks later" because I just got a call from them on Friday. The suspicion was that I have something called SVT , which apparently is an abnormal firing of the heart's electrical connections. They think the SVT was aggravated by the new stimulant and perhaps has been around awhile and just masked by my severely low thyroid. Who knows? But on Friday when my heart started racing and chest began hurting again, I sensed that something was very wrong this time. I checked my BP and saw that although my heart rate was well over 100, my pressure had dropped to 80/50. I decided it would be a good idea to head to the ER. But then I suddenly got very weak, I had this intense pressure in my chest and was struggling to breathe, and then I heard this loud buzzing in my ears and everything started to go black. I managed to whisper, "Call 911" and "Call my mom" to my husband.

I could barely stay conscious, but I remember thinking that this was it; I was going to die right here on my chaise lounge. I wasn't afraid to die, but I did have an overwhelming sense of regret that I had a lot of things left unsaid or undone. I managed to tell my husband I loved him and that I was sorry our life together had been so hard. By the time I made it into the ambulance my pressure had dropped to 40 diastolic. But the paramedic was very reassuring; he gave me 4 chewable baby aspirin and kept monitoring my vital signs. When the numbers started to go up, I seemed to be able to breathe better and have more strength, but I still had pain and pressure in my chest. He gave me a few sprays of nitro on the trip, and by the time I got to the hospital I was feeling a lot better.

But then on Saturday afternoon, the whole thing happened again. Only this time, my diastolic pressure plummeted to 31. I didn't even know it could get that low while you were still alive and/or conscious. But my doctor had told me that if you lie flat, it will bring up your pressure, so I lay down and tested it again a few minutes later with a reading in the low 50's. I swallowed a few aspirin as a precaution and exhauted beyond reason, fell asleep for several hours. When I woke up and retested my vitals, I noticed that my pressure getting close to normal but my heart rate was again approaching tachycardia. I decided to take 100mg of my beta blocker, but within an hour my blood pressure began to drop and my monitor was showing irregular heartbeats. I took some magnesium supplements and barely crawled into bed.

Today has gone pretty much the same with my pressure beginning to drop and my heart rate climbing up past 100 again. I just pray that I can hold off any major events at least until tomorrow when I hope the cardiologist can squeeze me in for an emergency appointment. I've learned to avoid caffeine and other stimulants and to force myself to cough when I feel light-headed. But mostly I have to stay lying down, which is a difficult feat in a house badly in need of cleaning, laundry in need of washing and folding, and countless other household chores that are beckoning. I know there are a lot of you out there praying for me, thinking about me, and maybe even worrying. I don't know what else is in store for me, but I love and appreciate you all and your outpouring of love and encouragement.

For now, I leave you with some verses from my favorite Scripture passage,
"Where can I go from your Spirit? Where can I flee from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there. If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast." -Psalm 139:7-10 Please know that no matter what happens next, I am safe in His care.

Unexpected Worship

When we think of worship, what usually comes to mind is a church service or singing in a church service. But there are many ways to worship God. I love to worship God by spending time looking at all the beautiful things He has created - the stars that shine so brightly in the sky at our house in the country, the birds that flock to our birdhouses or come to pick off the fish from our pond, and the beautiful plants and flowers that grow all around our property. Music is also a big part of worship for me. Often a song has the unique power to touch my spirit and bring me to a place of worship where God can speak just the right Words to me. But until I attended Freedom Fest at Trinity the other night, I had never before experienced worship through fireworks.

I'll admit it: I really didn't want to go to the festival. I mean, I can see the appeal for most people. There are TONS of attractions to ride and see, LOTS of food vendors, a live jazz/swing band, and of course, the fireworks show. But when you have trouble walking because of cataplexy, your health condition and medications give you an intolerance for heat, and you're doing your best to stay off carbs, a 5-hour festival on Trinity's large campus in the Florida sun and humidity amid a crowd of people eating ice cream is not the most comfortable place to be. I did ride my motorized chair which helped with the walking, and my husband set me up with a golf umbrella to keep out of the sun (I was already sunburned from 2 1/2 hours in the pool the day before), but I was absolutely sweltering. Also, having that big umbrella over me didn't exactly make me very approachable for people to talk to or even see who I was. It was nice to catch up with my mother-in-law and my husband's grandmother and also a few friends from Trinity that found me for a chat. But after a few hours, I was beat. I didn't want to ruin it for anyone else by leaving before the show, so when my husband suggested I sit out in the air-conditioned truck until the fireworks started, I thought that idea was very appealing.

When he came back to get me, I was sitting in a truck with steam-covered windows, pumping the A/C and listening to the radio. I had dried off, cooled off, re-fixed my hair, and had gotten a chance to recharge my battery from the effort it takes to just be around people and stay upbeat and friendly. When I opened the door to step outside I realized that although the sun had gone down, you could almost cut the humidity with a knife. I wasn't looking forward to being out in that again and almost told my husband to go ahead without me. But I went. After a somewhat unusual version of our national anthem was sung, the fireworks began exploding in synch with some very powerful Christian music selections. As I gazed up at the breathtaking array with Jeremy Camp's "There Will Be a Day" playing in the background, my heart swelled with love for a God Whose beauty and majesty far surpasses even that magnificent presentation. Everything inside me just wanted to stand up, lift my hands toward heaven and shout praise to Him! And through my tears of exhilarating joy I smiled to myself and to my King for allowing me to experience worship in such an unexpected way.

The Voice of Truth

Satan is a liar - a good liar. He attacks my mind when I'm alone and vulnerable. He knows which buttons to push and exactly when to push them. He's a strong enemy who always knows where and when to strike to get the best results. He tells me I'm worthless - that my life is worthless. I don't contribute to anyone or anything because I'm shut in my house all day every day. He tells me I don't matter to anyone and that no one notices when I'm missing. He tells me that I'm unattractive because I'm overweight and that people don't want to be around an unattractive person. He tells me that I have no friends and that no one understands the challenges I face every day because of my health. He tells me things in my life will never change and that I should give up hope.

But I have learned to recognize the voice of the enemy, the lies of the enemy. And because I walk with God and hide His Word in my heart, when the enemy speaks I hear another voice: the Voice of Truth. And that Voice tells me something else; that Voice tells me who I really am - who God says I am - because of Jesus Christ. And here it is:

"Blessed be the God and Father of our Lord Jesus Christ, who has blessed us with every spiritual blessing in the heavenly places in Christ, just as He chose us in Him before the foundation of the world, that we should be holy and without blame before Him in love, having predestined us to adoption as sons by Jesus Christ to Himself, according to the good pleasure of His will, to the praise of the glory of His grace, by which He made us accepted in the Beloved. In Him we have redemption through His blood, the forgiveness of sins, according to the riches of His grace which He made to abound toward us in all wisdom and prudence," - Ephesians 1:3-8

I am blessed
I am chosen
I am adopted
I am accepted
I am redeemed
I am forgiven

When I believe that I am who God says I am, the lies of the enemy have no power over me, whether they come from my own thoughts or by the lips of another. So when those thoughts come in a moment of weakness or distress, I just choose to listen and believe the Voice of Truth.

Memorize it. Hang it on your fridge. Tape it to your full-length mirror. Attach it to your sun visor. Satan knows your weak spot and he's waiting for a chance to attack. Be armed with God's Word so the Voice of Truth can drown out the lies of the enemy.

If We Are the Body...

A good friend and I have been discussing lately the issue of the body of Christ serving one another and bearing each others' burdens. If we as Christians were truly following the example of Christ and the early church, there would be a lot fewer Christians who are feeling defeated, disconnected, and overwhelmed by life's trying circumstances. That is exactly what the Enemy wants, of course: to keep Christians out of the fight and out of the way of his plans to thwart the cause of Christ.

My dear friend is a young mother who truly desires to please God and raise her children to know and serve Him. But with three very young children at home, she often feels overwhelmed and in desperate need of a break or some quality time alone with her husband. I know that there must certainly be other mothers in her local church who find themselves in this situation as well; could they not trade babysitting services to give other moms a break? What about single ladies in the church or young married couples without children? This could be a real opportunity for them to serve and to learn what it is like to walk in another's shoes. What about a retired couple whose grandchildren live far away? What a mutual blessing it would be for them to "adopt" some children from their church and offer to take them to the zoo, the museum, or the park for the day so Mom can actually get her hair cut or go out on a date with her husband!

But what happens instead? We look at our own situation and how frustrated and discouraged we are that we're a busy mom, a lonely widow, or a couple struggling with the pain of infertility. The Bible tells us that we should follow Christ's example, look at how others around us are struggling, and put their needs above our own (Philippians 2:1-11). When we are willing to do this, not only will we be blessed for our selflessness, but we might find that our own needs will be fulfilled as well. For example, I have a friend with 7 children who has basically been a single mom for the past several months. Yet every time she is going to be near the health food store, she calls me, who is stuck at home because of chronic illness and cannot drive, to see if there's anything I need from the store. She also has a job outside the home, but she came over my house with one of her daughters on a Saturday and cleaned my house because she saw that I was having a tough time. And my husband and I have been able to serve some of her needs as well. What a wonderful blessing to both of us! This is the plan God has for His people! Every part of the body has its own abilities and weaknesses and can serve another member in areas where they are weak.

But we are often unwilling to step out of our comfort zone or make a sacrifice for another brother or sister in Christ. After all, it's more convenient to just invite that couple over that you've known for 10 years because their kids get along with your kids and your spouses hit it off. But what about that couple that's new to the church and have no established friendships or even family that they can fellowship with or call on when they need some help? What about the couple that doesn't have children? It may be a bit more challenging to hang out with that couple because your children won't be occupied and playing with their friends, but don't those people need friends too? You're comfortable having a girls' night out with your two best girlfriends, but what about your friend with chronic illness? She might slow you down at the mall or the beach because she can't keep up with your pace. How about having a single mom over to your house so her boys can throw a football around or learn to work on the car with your sons and your husband? - guy things her son doesn't get to do.

Just something to think about. We all have needs and struggles in life, but we don't have to handle it all on our own. God has adopted us into His family, and He has given us thousands of brothers and sisters in Christ from all different backgrounds, family situations, financial conditions, and special talents and abilities that we can draw upon. Let's reach out to our Christian family and build one another up so that we can bring glory to God and win souls for eternity by the example of our faith and testimony.

"...there are many parts, but one body. The eye cannot say to the hand, 'I don't need you!' And the head cannot say to the feet, 'I don't need you!' On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, while our presentable parts need no special treatment. But God has combined the members of the body and has given greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it. Now you are the body of Christ, and each one of you is a part of it." -I Corinthians 12:20-27

The Birthday, The Bald Dog, and the Billy Goat - Conclusion

By now you have to be wondering about the goat. I almost feel like it didn't really happen, like maybe it was one of my crazy narcolepsy-induced nightmares. But, yes, there really was a billy goat. It all started when I let my two Siberian huskies out for their morning "constitutional," as I like to call it. When I opened the front door to let them out, I figured by the way they shot out that door that there was a squirrel, a rabbit, or maybe some geese or an egret in the front yard. Because their invisible fence only goes so far, giving any kind of animal they might chase a chance to run to safety, I didn't think much of it at first. But a moment later I heard something that reminded me of a viscious wild animal attack from the Discovery Channel, and I saw a flash of black fur at the back window. A feeling of dread went through me like a cold chill, and I knew the dogs had gotten into it with some kind of animal...a racoon maybe. Still in my pajamas and bare feet, I ran out the back door.

Much to my surprise, the dogs had cornered a billy goat of all things, and he was behind the grill making the strangest noise, eyes bugging out with fear. I yelled to the dogs to get into the house, but instead they both lunged for the goat, who made it several feet into the landscape bed before one dog grabbed it by the neck and the other by the throat. My dogs were going to kill this poor animal right in front of me! I began yelling as loudly as I could and banging on the patio furniture, but I may as well have been whispering. My dogs were completely focused on one thing only: this strange animal that dared enter their territory must be destroyed. Then I remembered reading once that if your dog ever gets into a fight with another dog, the only way to safely intervene is to pull your dog by the back legs. So I grabbed one of my dogs and pulled as hard as I could, landing on my rear end but succeeding in getting her away from the goat. She lunged for the goat as I reached for her collar and fought her all the way into the house and into her crate.

I could feel my legs turning into jell-o as I stumbled back outside to get the other dog. Narcolepsy attacks are often caused or worsened by strong emotions and/or exercise, both of which I was experiencing at that time. I knew that any moment my legs and probably my other muscles were going to completely give out; I was just praying it didn't happen until both dogs were safely inside and away from this stupid goat. It was much easier for me to extricate my male dog from the goat as he is much more mild-mannered, especially when his sister is not around to rile him up. Just as I got in the door with my other dog, I collapsed on the livingroom floor. I was worried the goat was hurt, but there was nothing more I could do as my legs were completely out of commission. I reached for the phone and dialed Animal Control (thanks to our puppy's father, I had the number stored in the phone). As the hopeless Animal Control officers made their way to my house to get the goat, I had to just lie on the floor listening to all 3 of my dogs howling and trying to break out of their crates. Of course, the officers never found the goat, although they thought the giant pile of hair in the yard that came from my dog was from the goat fight, and that gave me a good laugh.

A friend of mine who has a pet goat reassured me that goats are tough, resilient animals, so I finally stopped worrying that it had a broken windpipe and was off somewhere dying. And even though the excitement of the incident caused prolonged cataplexy that put me in the wheelchair the rest of the day, the dogs finally calmed down and quit trying to find the goat in the yard. Goats are apparently very stupid, however, because the next afternoon when I let my male husky outside to do his business, I heard a loud thud against the front door and thought "here we go again." When I opened the front door I saw that the goat, much braver when faced with only one of my dogs, was back and charging my dog with his horns. I called for the dog to run inside, but instead the goat ran inside my house! Not knowing what else to do, I just slammed the door behind him so that my dog was still outside. So now there's this angry goat in my house, and both big dogs are going crazy. But then my Watch Kitty comes running right up to the goat, fur all puffed out, hissing and growling, and the goat lowers its head, stomps its feet, and starts snorting. I'm thinking, "Great. My cat will be gored by a goat and the whole house is gonna be torn apart."

So I grab the phone and start calling people. First call to Animal Control: "INSIDE your house? How did it get in? Why did you let it in?" Then my friend who has a goat: phone number unlisted. Then the vet: INSIDE your house? How did it get in? Why did you let it in?" Then my friend in Pennsylvania whose huband grew up on a farm: "INSIDE your house? How did it get in? Why did you let it in? It's gonna tear up your house!" Then to my husband: "What do you mean INSIDE the house? Why did you let it in?" Click. People, your comments are not helping. Then my friend calls back after speaking to her husband. She tells me to get a water bottle and squirt it if it tries to charge. She says I can possibly calm it and distract it with some food. I try to give it lettuce and carrots, but it just gets angrier because I'm getting too close. So it just stands there in the corner of the room, stomping, eyes bugging out. And I'm waiting for the dogs to break out of their crates and my cat to attack any second. We stare at each other for what seems like an eternity until finally the animal control officer shows up at the door with one of those poles with a "noose" on the end that you see on Animal Cops: Detroit. I just pointed to the goat. He hooks it around the neck and starts pulling as the feisty little guy, who's actually pretty cute, is pulling back the other way. The officer can't believe I have a goat INSIDE the house. Can't believe I opened the door and he just ran in. Yeah. But that's what happened. I'm laughing now, but it was actually kind of traumatic at the time. It took my dogs like 2 hours after the goat was gone to stop running through the house sniffing and looking out the windows.

But I know better than to ask the question: "What ELSE could possibly go wrong?" Because I know the answer. During this "series of unfortunate events," I had been reading a Christian novel where the main characters were going through a lot of bad circumstances in their lives and were struggling, as I often do, with that same question, wondering "what else?" But then they remembered John 16:33, "In the world you will have trouble. But be of good cheer! I have overcome the world." It's pretty much guaranteed we will have trouble in this life. But we can encourage ourselves with this fact: Jesus has overcome the world. There's nothing that can happen that is more powerful than that - not a bad birthday, a bald dog, or a billy goat. Nothing. So cheer up! :o)

The Birthday, The Bald Dog, and the Billy Goat - Part II

A little over 6 weeks ago our purebred Siberian husky gave birth to 3 husky/rottweiler puppies. Obviously this was not planned; it was a result of having a neighbor down the street who refuses, despite repeated calls to Animal Control, to keep his unneutered dog in his own yard. The whole process of the birth and the next couple of weeks was a nightmare that included two of the pups dying, several emergency trips to the vet, and a LOT of lost sleep. Just as we started to actually enjoy having a puppy around, I began to notice the mother was losing a lot of hair. I would vacuum, and then a few minutes later I would notice clumps of hair blowing across the floor like tumbleweeds. At first I figured it was hormomal hair loss from the pregnancy and nursing. But when I asked my husband to take her outside to brush out the loose hair so I wouldn't see it all over the house, I realized it was much worse. I came outside after a few minutes and saw this absolutely HUGE pile of hair in the front yard. I was shocked. And when I saw that my beautiful Siberian husky had lost about 85% of her hair, I began to cry. My husband said that the hair was just coming off in sheets, like he was peeling off velcro.

After more research, I discovered the cause: we had been told by the vet to shave her belly so that the pups could find her nipples to nurse. She had already lost a lot of hair on her belly in the days before she gave birth, but if you're familiar with huskies you know that they have a thick undercoat of fur that made it very difficult for a blind puppy to locate the source of the milk they desperately needed in the hours following their birth. So we got an electric razor and shaved around the nipples. BIG, BIG mistake. Apparently huskies, as well as a few other "cold weather" breeds should never be shaved. It causes the hair follicles to die all over the coat, which causes the hair to fall out. Apparently the vet didn't know this, probably having never come across it in Florida where huskies are rarely seen. So now we have a bald dog. I feel like crying every time I look at her. And now she's losing hair on her head, neck, and tail...I'd been holding out hope that this wouldn't happen.

I had a friend go to the health food store for me (since cataplexy keeps me from being able to drive) to get cod liver oil, as the Omega 3's should help her get her coat back, a process I'm told usually takes 6-12 months. And I also ordered some multi-vitamins to supplement her nutrition even though we have the dogs on a very high-quality food. You should have seen me trying to give her the fish oil with a medicine dropper. I felt like I was wrestling an alligator or something. It finally took both me and my husband holding her down/sitting on her to get it down...or at least most of it. Then I realized I could just pour it on her food. Duh! So much easier.

I just ran the vacuum cleaner last night, and as I look at the living room carpet I can see about 5 or 6 clumps of hair blowing across the room. The dog just walked by looking more bald than yesterday, with clumps of hair hanging off her body, ready to fall off all over the house. But I won't ask - I dare not ask the question: what else could possibly go wrong?

To be continued...

The Birthday, The Bald Dog, and the Billy Goat - Part I

I'm sure there's been a time in your life when you thought, "What else could possibly go wrong?". I quit asking myself that question a long time ago because there always is something else. It seems like the month of May has ushered in a whole series of "something else" for us. First, I took my husband out of town for a little birthday weekend, a much-needed time of rest and perspective for him during the busiest, most stressful time of year for our business. While we were gone, our most experienced employee decided he didn't want to work for us anymore. We had already paid to stay in our hotel Sunday night and planned to check out in the morning, have a nice breakfast, and start a leisurely drive home. After this bombshell hit on Sunday evening, we had to rush home to make sure we had a supervisor to take over that crew, especially since another of our key employees was to be on vacation that whole next week. So we got home at 3am Monday, feeling stressed, emotionally spent, and angry that our special time together had ended so badly and abruptly.

During the next few days, we were also hit with a family-related situation that added another level of anxiety. It was one of those situations where people feel caught in the middle of a drama that was caused by someone making an ill-timed, poorly-planned decision that had devestating effects on several family members. I was particularly hurt by the way things happened and went through a whole range of emotions. Because stress, lack of restful sleep, and strong emotions can cause cataplexy (an aspect of the sleep disorder narcolepsy, which causes loss of muscle tone, often leaving one temporarily unable to use some or all of the body's muscles), I have spent the past 9 days at least partly incapacitated and had a few prolonged attacks of cataplexy that lasted hours.

I don't know if the animals have been responding to the stress, but it seems they have all begun acting out in ways they haven't since they were babies. One of the cats has begun urinating in one corner of the dining room every morning, which is a lovely thing to wake up to and step in while still in a morning stupor. And then I discovered that one of the dogs had been going "potty" on the guest room carpet for a couple days, which we didn't notice until I was in there putting guest towels away. We also have a six-week-old puppy that is kept in an area where there is only tile floor, but that area requires clean-up every day to refresh the bedding and the newspaper where he "goes" until we can begin potty training. And of course he needs a lot of attention and care throughout the day. So in the midst of everything, I feel that the house is in a constant state of chaos, which of course leads to more stress, which leads to more cataplexy.

To be continued...

Waiting

John Waller - While I'm Waiting (Official Music Video) from Provident Label Group on Vimeo.

Waiting is never easy. I remember how difficult it was to wait when my husband and I were dating. For 18 months of our four-year courtship we lived apart and had to rely on telephone calls and letters, not emails, to communicate with each other. We literally wrote letters almost every single day and spoke on the phone a few times every week. In the days before cell phones and unlimited long distance plans, it got very expensive to have lengthy phone coversations, and my husband would easily pay $200-$300 each month in phone bills. Waiting for the mail to come or for the day of our next scheduled phone call to finally arrive would seem excrutiating.

We didn't see each other very often during those 18 months, so a face-to-face meeting was a very precious experience to us. My husband had a client that worked for an airline, and that client would sell him "buddy passes" which allowed airline employees and their friends and family to fly stand-by on flights for a small fraction of the cost of an airline ticket. When he told me that he had gotten a pass, we would count down the days, hours, and minutes until the day came when we could be together. That time of waiting would seem to drag on forever, but we waited with eager anticipation for the moment we would be reunited.

Although the wait was difficult, our love and faith in each other kept us going during those long days apart. People would often make remarks to us about how long-distance relationships rarely work out, how couples drift apart when they don't spend time together regularly, and how our hearts would stray as we met other attractive people who could be more present in our lives. But what these naysayers didn't realize was that our relationship had already been tested in ways many people don't experience even after years of marriage. We had faith in the love, loyalty, and commitment that had been forged through life's difficult challenges, and we knew that in the end, the wait would be worth it.

I've been on a quest for over 16 years to discover the cause of numerous health issues that have grown exponentially in both severity and frequency. I have been to more doctors and hospitals, had more tests, procedures, and surgeries, and done more research on medical issues than I could ever count. Since the fall of 2007, my search became much more intense and desperate as my health condition swiftly declined, and I began to pray for God's wisdom and for Him to show me "great and mighty things that [I] do not know (Jeremiah 33.3)." And I believe that my prayers have been rewarded with God's leading toward a completely different philosophy in treatment and diagnosis as it relates to my Hashimoto's thyroid disease. I was even able to find a doctor in my area who specializes in this treatment and is a provider in my health insurance network. However, the first available appointment is not until June 10th. When you've been ill for so long and you feel you're on the cusp of a major breakthrough, a month is a LONG time to wait! And I first became really irritated that I came this far and was now forced to wait some more. Then God spoke to me in my heart and said, "I've been with you and have brought you this far; can you not trust my timing? I know how long the wait has been because I've waited with you. Just wait on Me, and continue to worship Me while you wait.

"I wait for the LORD, my soul waits,and in his word I put my hope. My soul waits for the Lord more than watchmen wait for the morning, more than watchmen wait for the morning." -Psalm 130:5,6

Houseguests

"We who are strong ought to bear with the failings of the weak...Accept one another, then, just as Christ accepted you, in order to bring praise to God." Romans 15:1,7

Wow! It's been awhile since I last posted. I suppose that could be because I have had two straight weeks of family visiting for spring break. I absolutely LOVE my family, but if two weeks in a row of houseguests is tough for the average person, imagine dealing with all those extra people when you have chronic illness. For one thing, my husband was out of town for the week immediately preceding Phase One of The Spring Break Visit of 2009. If you read my previous post, you know that week wasn't so great for me. I had hoped to have everything all cleaned and ready before my little sister flew in that weekend, but of course I never got to any of those things because of how ill I was. I've never been very good at letting go of things that need done around the house. I usually just push myself really hard to get them done. But lately, that has not been an option. So I had to swallow my pride and allow people to see life as it really is around here. And, amazingly, the people that love me are just happy to be with me, messy house and all.

In fact, while my family was here they cooked, cleaned, did laundry, vacuumed, and let me rest. I've never had people come to my house to visit and actually serve ME before. It really showed me that my family has begun to understand the burden I carry with my chronic illness. I don't have to put on a show for them and run myself ragged trying to entertain them. Just to be here with me is enough. That's love. That's acceptance. That is something I think every person dealing with chronic illness wants from those they care about. And I feel so blessed to have family like that.

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.

Living on the OTHER Side of the Bridge

I've been reading Don Piper's book Heaven is Real since I went to hear him speak at a little church down at the beach several weeks ago. His first book 90 Minutes in Heaven really ministered to me, as I mentioned in a previous post called "Heaven's Sounding Sweeter." In this recent book he talks more about his life after the car accident and how he discovered that when he literally crossed the bridge at the time of the accident, he left the life he had known and began a new life that included a lot of pain, as well as many physical, emotional, and spiritual challenges. He goes on to use the term "crossing a bridge" as a metaphor for the changes we all face in life when we leave the life we knew behind and enter a new life. (i.e. leaving your parents home and going to college; leaving your single life and entering marriage; leaving a career for retirement, etc).

I had to stop reading the book. I needed time to really chew on the concept of crossing bridges in my own life. I believe I crossed a major bridge in my life at the age of 16 when my health began to fail. I went from being an athletic, energetic achiever to a sick person almost overnight. As my health has progressed from bad to worse over the 16 years that followed, I struggled with the question of my purpose in life. I kept waiting for this major event to happen that would make it clear why God has allowed my life to so drastically change. Then I began to live in a fantasy world in my mind where I was completely healthy again and things were back to "normal." It was only about a year-and-a-half ago that I actually accepted the idea that God may never allow me to regain my health in this life and that my purpose may be to be an encouragement to others that are walking through difficult circumstances. This was a major spiritual and emotional breakthrough for me that changed my entire outlook on life. But something still wasn't right, and I didn't know what it was.

People have all kinds of advice to give me on how I should be living, how I should handle my health issues, and which passages in the Bible they feel I need them to point out to me. But in reading this book I think I've figured it out: I have accepted my poor health as a part of the life God has for me here on earth, but I don't know how to actually live this life. I don't know how to be a sick person. I don't know to live in this frail body. I'm willing to accept that I have a different life, but I just haven't learned what to do with it. I don't know what to do on the other side of the bridge.

For example, I recently began a new workout routine that includes cardio and weight training; and when I decide to do something, I commit to it 110%. I was out in the garage every single evening just really pushing myself. My husband kept telling me that I was trying to do too much, but I don't really understand the concept of "taking it slow." So just as I'm beginning to really master this new routine, I pulled a muscle in my back. I felt like I lost this entire week, and I was just worrying that I would lose so much ground not working out that it would put me right back where I was before I started. If I had acted like a person with a disease that affects my muscles and just started out really slow and worked up to the level I started at, I probably wouldn't be blogging right now with a giant blue ice pack behind me. In my mind, I often forget that I'm not someone who can physically do what others can do. I'm trying to be the person I used to be instead of the person God wants me to be right now.

So God sent someone to my home to work on my back. But she did much more than that. She reminded me that God knows right where I'm at, and he loves me just as I am. I don't have to push myself to be someone I am not capable of being. Perhaps God wants me to be still and really get to know Him in a way I could never know Him if I was running around doing all the things I used to do. He chose me to be set aside right now so that we could spend some time together while I learn how to live the life He has for me.

Show me your ways, O LORD, teach me your paths; guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long.
-Psalm 25:4-5

How to Surprise a Control Freak

I am not an easy person to surprise. I ask a lot of questions and like to have a lot of details. I like to know what's going on so that I can make a plan...and a back-up plan...and a back-up plan for my back-up plan. Basically, I'm a control-freak. It's something God and I have been working on for a long time, believe me. At least I freely admit it now, which is actually a big step for me. So when my dear husband decided to surprise me for Valentine's Day, he knew he was really in for a tough time.

We had already decided we didn't want to do the expensive dinner out thing. For one, I had not been feeling well for the past couple days. I had pulled my chest muscles working out, and it aggravated my hiatal hernia so that I couldn't stand to eat anything that wasn't soft...like mashed potatoes or oatmeal. We weren't gonna go to Morton's and order mashed potatoes for an entree. I honestly was in the mood to just stay in and watch a movie together on the couch. But he told me to be ready that evening to go out and eat at at a casual restaurant; you know...somewhere they don't frown on people eating mashed potatoes as a meal. I really dragged my feet on getting ready. I didn't feel like going out, and I kept asking my brother if he knew whether my husband was planning something specific or not because I really wanted to stay home, but I didn't want to ruin any plans he might have. He wasn't helping.

When it was time to leave and my sweetheart handed me a list of restaurants in a particular town to choose from, I got a little annoyed. If he was forcing me to go out, he could have at least planned something! I don't like to go to resstaurants that I've never heard of. I try to stick with chain restaurants or restaurants that have been personally recommended so that I know what to expect. Again with the control-freak thing. Of course, in this little town, there wasn't an Olive Garden or a Red Lobster to be found. So I ask why we must eat in this particular town. Couldn't we just eat somewhere like Ruby Tuesday's in the city and then go home? he tells me that he wants to at least head down in the direction of the little town, but we can stop and eat along the way. I ask what's so important in the town...he tells me to be patient and stop asking questions.

So we eat at a casual chain restaurant, and then we just start driving. I ask where we're headed. He tells me to please just enjoy the drive and not ask questions. But I want to know if we're headed somewhere specific or are just driving aimlessly. He starts to get a little annoyed with me. Then we stop at a couple of our commercial clients' properties, and he shows me the new mulch we just put down that week. I'm like "Ok. That's nice, but are we going somewhere?" We drive some more. Then we head into a subdivision that we take care of for another client. He asks me if I've ever seen that property before, and I very impatiently tell him I really don't care, and are we just going to take a tour of all our customers' properties or are we actually doing something? Finally, he drives up to a hotel and spa inside the subdivision. I never even knew it was there! He announces that we're spending the night there and that he had already packed my stuff and brought it with us. My first thought? Oh, no! He probably forgot my contact solution, my glasses, my medicine. I bet he didn't pack me the right clothes! So I start going down this list with him, quizzing him on what he brought. He tells me to just be patient and go inside.

When I got inside, I was truly amazed. He had been to the resort before me and had already checked into the room to prepare it for me. He had 6 dozen multi-colored roses either spread out all over the bed or in vases on the tables. There were candles everywhere. And dark chocolate. And my clothes were in the closet! All my hair products and toothbrush and hairdryer were all put away in the bathroom vanity! It was much more than I would have ever expected. And it just felt good that he knew what would please me and make me feel comfortable and relaxed...and loved. Then I felt like a jerk. I had interrogated him about all the details of what we were doing. I had gotten annoyed when I thought he didn't have a plan. I had not trusted him to know me well enough to know what I would like or what I would need. Yet he had something prepared for me that I would never have guessed or expected. But it was just what I wanted and just what I needed.

I was reminded of my heavenly Father. He loves me with a love to which my husband could never compare. He tells me in His precious love letter, the Bible, that He has a plan for me. He says that He has prepared great things for me that are above anything that I could ever ask or think. But I want to know now. Where are You taking me, Lord? Will I like it when we get there? Maybe You should tell me the details now so I can prepare. Or maybe I would rather do something else besides what You have planned. Will we be there soon, or are we just wandering around wasting time? I really need to know. Maybe You forgot, Lord, but I have some special needs; I can't do things that other people - healthy people - can do. You may not have thought it through, but there are things You really should take into consideration. God, why are stopping here? I don't see what this has to do with anything. But all time, He knows what the end will be. He knows that when I finally see His plan that it will all fall into place and I will see that He truly knows me and loves me better than I even know myself. If only I had trusted. If only I had waited patiently for the surprise. But I'm a control freak. It's something God and I have been working on for a long time.

“Eye has not seen, nor ear heard, nor have entered into the heart of man the things which God has prepared for those who love Him.” I Corinthians 2:9

The Complexity of Cataplexy

What is cataplexy? That is a question I hear all the time. I have heard it from doctors, paramedics, and nurses who are attending to my medical needs. I hear it from family, friends, and new acquaintances. The truth is, there's no easy answer. The best way that I can describe it is that it is an aspect of the sleep disorder narcolepsy, which affects about 30% of naroleptics by causing sudden loss of muscle tone, often in response to strong emotions, exercise, or fatigue. During a cataplexy attack, the sufferer may appear to be unconscious or asleep, but in fact is completely aware of his surroundings, although unable to respond phyically due to the "paralysis" of the muscles. Okay...so now you know what it is, but how does it affect a person's everyday life? That's really a tough question because it really affects everything. But let me give you a recent example in my life.

We recently started attending a new church, largely because of the difficulties I have with my narcolepsy. Our new church is just a few miles from our home, making it easier for me to make it to services. However, any time I have to be awakened before my body is ready to wake up naturally, almost certainly will result in a cataplexy attack or even multiple attacks throughout the rest of the day. It takes my husband several minutes to get me awake enough to take a stimulant medication that will give me the energy to actualy get out of bed and get ready. I lie in bed and just wait for the drug to "kick in," because I've learned the hard way that if I get up too soon, I'll end up having an attack while I'm brushing my teeth or going to the bathroom. One time I fell backwards while brushing my teeth and hit my neck and back on the bathtub. Needless to say, I try to avoid a repeat of that catastrophe.

Even with all that, we've found that if I go to Sunday School and the main worship service afterward, it is almost inevitable that I will have an attack by the end of the service. The first week I attended, our class got out late, so the only seat we could find for the worship service was on the second row, right in front of the pulpit. About 20 minutes before the pastor finished speaking, I started to feel an attack coming on. I didn't want to walk out because we were right in front, and I didn't know how well I'd be able to walk at that point. I didn't want to make a big scene, so I just prayed that it would hold off. As soon as he started to pray, we got out of there and just barely made it to the car before the attack hit me. But the next week, it happened right in the middle of his sermon. Although we were sitting a little farther back, I was still really upset that it happened because I felt like everyone in the choir and the pastor probably thought I just fell asleep during the service. My husband says it only feels like that to me and that most people probably didn't even notice. (But then he told me yesterday that I started to breathe really loud...almost like I was snoring. Yeah. That's really inconspicuous).

Often when I start to come out of the attack, my muscles gradually begin to work again, usually ending with my legs. Sometimes it's a long time before I can actually stand up and walk. So, of course, we were the very last people to leave the auditorium. And even though we park in a handicapped space, it's still quite a long way to walk from the pew out to the car. I do have a motorized wheelchair, but I hate to use it at church since we're mostly sitting down anyway. I use it when we go to the mall or grocery shopping or something where there's a lot of walking, but if I can avoid using it, I try to do that. But before or after an attack, I definitely need assistance to walk even a short distance. I try to find things like walls and door posts I can hold on to, but my husband normally ends up helping me by letting me lean on him. I always hate that part because I feel like an old lady or something, and of course I want to feel and look normal.

By the time I get home from church I'm pretty much done for the day. The whole ordeal of getting ready, going to Sunday School, going to the service, having the attack, getting back to the car and coming home basically takes it out of me. We usually end up eating fast food for lunch and then I fall asleep on the couch by mid-afternoon. I sleep for hours. When I wake up it's almost dinner time, which is another prime time of day for me to have cataplexy. So that pretty much guarantees I won't make it to an evening service. I used to feel really guilty about that, mostly because people would make comments about how I should be there and how they know 10 other people who have it worse than me that still make it to church for every single service. But I know my limits and what I can and cannot handle. And more importantly, God knows my heart. He knows how hard it is for me to be at church at all and to watch other people serving in the choir and special music, things I've always done, and wonder if I'll ever get to do those things again. He knows the anxiety I feel, wondering if I'm going to make it through the service without an incident that will cause me embarrassment. So I just do what I can, and I pray that I can find a way to get into some sort of regular schedule where I am able to do the things I want to do again.

So that's my life. I'm not complaining...I just wanted you to know what it's like. You may not ever understand, but that's okay. If knowing makes you a little more compassionate and thoughtful of others who have health issues and disabilities, then I've done my job. You really have no idea how many people around you are hurting and wishing someone understood their pain. And you would be surpised how often those people are subjected to insensitive and even cruel comments and behaviors because of things they cannot control. So keep your suggestions about how you think they should handle life to yourself. And pray for them, tell them you're happy to see them when they do make it, and call to say you missed them when they don't. Don't judge what you don't understand, and just love that person for who they are right now. One day that person may be you.

Join the Club

I've been seeing things...numbers, specifically. I started out seeing the numbers 9-1-1. Yep, I'm serious. Every time I would look at the clock it was 9:11. At first I thought it was a coincidence, but it was happening an unusual number of times to be merely coincidence. Afraid of sounding like a nut, I didn't tell anyone about it. But then my friend shared with me that she had been seeing the numbers 3-3-3 everywhere for a long time. I asked her what she thought it meant, and she said she didn't know, so we looked it up on the internet. Apparently there are several groups of people that see number patterns too. There are all kinds of numerology experts thats see all kinds of deeper meanings in numbers and number patterns. It's the kind of thing that reminds me of my teen years when they would show us videos about how all rock music artists are from the devil, and they would "prove" it by showing how the album art contained all these supposed hidden Satanic symbols. (If you turn the album upside down and look at it during the autumnal equinox, while wearing special glasses, you could "clearly" see that the background was actually a pentagram or goat's head...or maybe both).

After sifting through all the loonies, I did find a group of Christians who all claim to have frequent sightings of 3-3-3. Their answer to this odd phenomemon is to pray. And to specifically pray the promise of Jeremiah 33:3 which says, "Call unto me, and I will answer you, and show you great and mighty things, which you do not know." So, my friend and I decided that we would join Club 3-3-3. Every time we see the numbers 3-3-3, we will stop and pray that God will show us great and mighty things that we could never know or discover on our own. Call me crazy, but since that day, I stopped seeing 9-1-1 and started seeing 3-3-3. The clock says 3:33, I was in room 333 in the hospital, there were 333 parking spaces left in the garage, and it goes on and on. I've got my husband pointing out "sightings" now. And each time we stop and pray. We ask God to show us great and might things. Things we don't know.

I don't know about you, but there are lots of things I don't know. For example, I don't know why I'm sick all the time and keep getting additional diagnoses for new diseases I supposedly have. I don't know why the treatments that seem to be working for other people with these diseases don't seem to work for me. I don't know which doctor out there will take the time to actually see me as a whole person and not as a symptom. I don't know where I'm going to get the money to keep on paying $50 a visit to see specialist after specialist and $30-$50 to pay for drug after drug that they prescribe. I don't know which doctors to believe and which treatments to accept. I don't know which symptoms are from disease and which are from all the drugs they're giving me. I don't know how I'm going to come up with $15,000 to pay for a surgery my insurance won't cover but all my doctors say I must have. But God knows. So I'm going to keep asking. Every time those numbers jump out at me on the game clock during a Steelers game or the time counter on the CD player. God wants to show me great and mighty things, but I have to first call on him.

There are things you probably don't know. So join the club. Club 3-3-3. And get ready to discover great and mighty things.

The Real Thing, Baby

Originally Posted Tuesday, December 16, 2008

"Foolish heart, looks like we're here again
Same old game of plastic smile
Don't let anybody in
Hiding my heartache
Will this glass house break?
How much will they take before I'm empty?
Do I let it show?
Does anybody know?

But You see the real me
Hiding in my skin
Broken from within
Unveil me completely
I'm loosening my grasp
There's no need to mask my frailty
'Cuz You see the real me

Painted on, life is behind a mask
A self-inflicted circus clown
Tired of the song and dance
Living a charade
Always on parade
What a mess I've made of my existence
But You love me even now
And still I see somehow

That You see the real me
Hiding in my skin
Broken from within
Unveil me completely
I'm loosening my grasp
There's no need to mask my frailty
'Cuz You see the real me

Wonderful, beautiful is what You see
When You look at me
You're turning the tattered fabric of my life
Into a perfect tapestry
I just want to be me, yeah, yeah, yeah…
I want to be me

You see the real me
And You love me JUST AS I AM
Wonderful, beautiful is what You see
When You look at me."

This song really encouraged me to live a more authentic life and not be afraid to let others see me struggle with the fragility of my faith. We all learn to fake a smile and pretend we always have it all together, but God sees what's real and loves us just as we are. My blog (or Facebook "Notes," however it came to you) was always a way for me to let people know about the very real struggles I have each and every day. I shared the good and the bad. I want to keep doing that because it's real and it's true. And other people need to know that no one is perfect and no one is without emotions, temptations, and doubt. If you want to hear only warm, fuzzy stories about how spiritual and strong I am, then you've come to the wrong place. If you want to hear about the ups and downs of a real person's life, who loves the Lord with all her heart and wants to serve Him with her life, but who does not hide the difficult steps along the path her heart takes on this journey, then keep reading. This is the real thing, Baby!

My NEW Dream Vacation

Originally Posted Tuesday, December 9, 2008

We just got home from a week-long vacation in Orlando a couple days ago. Of course now I'm dealing with re-adjusting to a normal schedule, if there is such a thing for me. And it seems like there's so much to catch up on from the time you were gone...it's almost overwhelming, really. This vacation was quite a bit different from previous ones. I mean, I've almost always had to deal with health issues on any trip we've taken, but this was the first year that things were drastically different because of my health. And I learned a few things about planning future vacations.

We've always been theme park people. We love roller coasters, thrill rides, shows, and all the big tourist attractions. We have season passes to Universal, and we had annual passes to Disney last year. So, the first thing we do when we get to Orlando is buy a 4-day Disney park-hopper, and then we proceeded to plan out which parks we'd go to on each day. Well...I never made it past the 2nd park. And I spent most of the rest of the week in the room at the resort. I just could not and would not spend another day in the crowds, in the lines, in all the noise.

For one thing, I had to be pushed in a wheelchair through the parks. Between my kidney issues and the accompanying back pain, and the frequent cataplexy that causes my legs to turn into rubber bands, there was no way on earth I could do all that walking. Then, despite being pushed in the wheelchair, I get pretty tired out after like 3-4 hours of doing anything. The guys took turns wheeling me around, but they were getting stressed out and worn out from trying to maneuver all the uphill/downhill stuff, not to mention the crowds of people who constantly stop walking in the middle of an uphill walkway, block the ramps to get up on the sidewalks, and just walk right in front of you, causing you to come to a screeching halt to avoid either dumping me out of the chair or running over the backs of their heels. We just weren't enjoying ourselves because of all the stress of it.

The guys went to a few more parks during the day while I hung back at the resort, catching up on Animal Planet, Fox News, SportsCenter, and reruns of 7th Heaven. But they would always come back frustrated that they didn't get to do much and that there were just too many people. We honestly just watched a lot of mindless TV, slept, and played video and board games the rest of the time. Maybe that sounds pretty boring, but I guess we're just into boring nowadays. We found ourselves almost wishing we were back at home, in the peace and quiet of the country, and especially away from all the crowds of people. Maybe we're just getting old, but the "happiest place on earth" just seems like the most crowded, stressful place on earth. I never used to understand why people would go to a secluded cabin in the woods or a quiet beachfront to go on vacation. I mean, what would you do all day? Nothing...that's what. And that's sounding really good right about now.

My Brother Was My Keeper

Originally Posted Friday, November 21, 2008

Last Thursday, my husband and I were supposed to leave for a trip to see my sister-in-law play in her college soccer tournament. But things didn't work out that way. After having surgery the previous Friday to remove a large kidney stone, my recovery was not going well. In fact, early Thursday morning, I went to my urologist to have the stint removed from my bladder. The doctor and assisting nurse both assured me that I would feel SO much better after it was out. Less than an hour later, I was on my way to the nearest emergency room, screaming and crying from horrible lower back pain. My husband called the urologist, who explained that "some people" experience these spasms of the ureter after having a stint removed, and that there was nothing that could be done but to hurry to the ER for some serious drugs to control the pain.

SIX doses of pain medicine later, I was resting somewhat comfortably, waiting for the test results. The doctor came by to inform me that I was, in fact, experiencing spasms as a result of the stint being removed. He said that the spasms, once under control, were "very unlikely" to happen again. After most of the day in the doctor's office and ER, I was sent home with a prescription for some stronger pain medicine, "just in case." Jon had planned to go ahead on the trip without me, leaving me home with my younger brother to help out. But he decided to postpone the trip until he was sure things were stable with my health.

The next morning on awakening, I began experiencing these horrendous spasms once again. But with the combination of anti-inflammatories and the strong narcotics I was given, it appeared I had the situation under control. So he left for the trip. Less than two days later, I developed a high fever and was having severe difficulty passing urine. I sent my brother out to the drug store in town to get something called Uristat, which relieves the bladder spasms and allows you to pass urine with the added bonus of dyeing all bodily fluids a bright orange color...tears, sweat, urine, etc. We live in a very rural area, so a trip to the nearest drug store is quite a drive. When he returned with the medicine, I quickly discovered that the pharmacist, who barely speaks English, had led him to believe that a generic brand of a cranberry supplement contained the same ingredients as the Uristat. And now the pharmacy was closed...and the ONLY one in town.

I called my doctor as my fever was climbing, wondering if I needed to go to the ER. He said to come in if it went above 102. So we BOTH got into the car and drove the 20 minutes to the nearest Walmart. I insisted on going along, wanting to be certain we got the correct medicine. When we parked the car and I began to get out, I realized my legs were feeling quite "rubbery," an indicator that a cataplexy attack was imminent. When we entered the store, I barely made it inside to collapse onto the nearest bench while my brother went in search of a power chair. Although the store was nearly empty at this time of night, there didn't seem to be any chairs available, and when we asked the "greeter," she casually suggested we go all the way down to the other end of the store and check that entrance for chairs. I was in my pajamas, socks, flip-flops, and a hoodie pulled over my head, and I'm sure it was clear that I was not feeling well. Leaving me on the bench, my brother sprinted to the other entrance, returning with the coveted power chair.

We began searching the pharmacy area for the Uristat but could not find it. There were no employees in sight to ask for assistance, so we continued down every aisle in a desperate search. Finally, we found another medicine called AZO that appeared to be similar, so I decided to use my cell to call my mom in Michigan to ask if the active ingredient in the AZO was the same as Uristat. But when I went to reach for my cell, I realized my hands and arms had also stopped working, another sign of cataplexy. My brother had to dial and hold up the phone to my ear as I spoke to my mom, who assured me these medicines were the same. We grabbed two boxes for good measure, since it appeared there was some kind of "run" on urinary pain meds, and we proceeded to the checkout, my brother having to operate the chair controls for me. The whole time, I was silently praying that the cataplexy would go away because I would have to somehow exit the chair and get into the vehicle to go home.

However, we both realized as we exited the store, that we were going to have to get very creative to get me into the SUV. Meanwhile, my brother had recently suffered an injury to his right shoulder, which really limited his mobility of that arm, and was obviously very swollen and painful. So...we have a one-armed brother...a muscular, yet small-framed brother...and a nearly paralyzed medium-framed, much-larger sister. Somehow, with very little help from me, he was able to basically lift me up into the vehicle. As we're driving down the road, my bladder spasms began to worsen. He begins driving as fast as possible to get me home, all the while both of us silently wondering how I would get into the house and all the way into the bathroom without the use of my legs (my arms had regained some use). Once again, we miraculously got me out of the vehicle and into the house, leaning me against a wall and onto the arm of the couch for support while my brother went to get the wheeled office chair.

Unfortunately, the bladder medicine I had taken on the way home apparently released the spasm, causing me to lose control of my bladder before we could get me into the office chair. So, much to my embarrassment, my 18-year-old brother graciously helped me to the toilet and helped dispose of my soiled clothing. It doesn't get any more real than that, people. Somewhere during this ordeal, my brother made the remark that he suddenly had a new respect and appreciation for my husband, as these things happen quite often, and my husband is the one who deals with all those details. Now, this is coming from someone who lives in our home and is around us all the time. Yet, until he actually had to be solely responsible for my care, he had no idea what it was to walk in my husband's shoes! I'm sure other friends and family members would be in for quite a shock if they spent a day or two taking over his responsibilities.

At this point, I was having to go to the bathroom every 10 minutes, which is quite an ordeal when you can't move your legs! So we called the expert, my husband, who recommended my brother put together a piece of medical equipment he had recently purchased for me for such an occasion. It's a sort of walker with wheels, which allows me to put most of my weight on my arms, and use the wheels to shuffle my feet along. I tried my very best not to have another accident while the Rollator was being assembled, and I was very quick to try it out as soon as possible. Unfortunately, it does not fit through the bathroom door, so there was still some creative use of my upper body strength to get me to the actual toilet. But after falling asleep for about 45 minutes, I was able to regain use of my legs for the rest of that long and terrible night.

About 5:30am, I woke up, soaked through all my clothes and blankets with sweat. But I no longer felt feverish. Sure enough, when I took my temperature, I confirmed my fever had finally broken, probably due to the huge dose of antibiotics I had taken the night before. There was certainly a long road ahead to healing, and I have still not reached the end of this road, although my surgery was done 2 weeks ago. I'm scheduled for an ultrasound early next week to see why I'm still not recovering from the symptoms of my kidney/bladder ordeal. But I'm very, very thankful to have my partner home with me. And I'm very thankful that God has given me someone who loves me with the kind of unconditional love that many people never get to experience. And I'm thankful to have my little brother here with us and to see the strength and yet the gentleness of his character as he took over as my caregiver. It certainly brought us closer together and, I believe, gave him an experience that will make him a more empathetic and compassionate person, a lesson most people go a lifetime without learning...a lesson one can only get by walking in someone else's shoes.

I Want My Mommy!

Originally Posted Sunday, November 9, 2008

I wonder if any other grown woman has ever had the thought, "I want my mommy!" I have certainly had that thought many times as an adult. I'm sure it's partly due to the fact that I have such a caring, compassionate mother who took wonderful care of me as a child and many times as an adult as well. I've had many surgeries in my life, beginning at age 12, and my mom has always been there to care for me and help me recover after surgery. But two days ago, I had my first major surgery without the benefit of having my mom here to help me get through those first few difficult days following surgery. And I found myself thinking several times, "I want my mommy!"

If you've never experienced major surgery, you could not know the pain and discomfort that comes from the very moment you wake up from the anesthesia. On Friday, I had surgery to remove a large kidney stone that has been lodged in my urinary tract for over a month. They implanted a stint in the ureter to expand the tube, allowing them access to the stone, in order to break it up with a laser. They left the stint in so that the tube can drain and any remaining pieces of the stone can also pass. I really didn't expect to be in such great pain after this surgery, especially since there weren't any incisions. But when I woke up, I remember literally writhing around and crying out loud from the intense pain. The nurse came by to give me a shot of morphine, but it didn't even phase the pain. So I begged her for another shot, which also didn't stop the pain. She finally gave me a third shot of a different pain drug, which did finally at least take the edge off. The nurse said I couldn't have anything more because it was affecting my breathing; she told me to take my own oral pain meds when I returned to my room. And that's how it's been ever since. Constant pain.

I remember the nurse telling me I could go home as soon as I could urinate without a catheter. Hating the hospital as I do, I made it my life's mission to go to the bathroom. It hurt...really bad. And there was a LOT of blood. The nurse said this was to be expected, but she didn't tell me how long it would last. It's been 5 days now (it's now Wednesday, 11/12), and I am still in a significant amount of pain. My life basically consists of sleeping, waking up to urgently go to the bathroom, drinking a bunch of water, taking more pain medicine, and going back to sleep. For the first several days I could only sleep for maybe an hour at a time; now I can make it 2-3 hours before I wake up feeling like I'm going to explode if I don't make it to the bathroom. There's still quite a bit of blood, but after panicking about three days into this, I heard straight from the doctor that the pain and bleeding would go on for "several days." I'll say!

A couple friends from my Bible Study Fellowship at church have stopped by to visit and to bring a meal, but mostly I've been on my own with this whole experience. I finally mustered up the strength to take a real shower last evening. I have this shower bench my husband bought me so that I can still shower when I can't stand up...usually from cataplexy...but it still hurt to bend and reach and stuff. By the time I was finished, I was ready for my heating pad and some serious pain drugs. I have basically not been able to go more than 10 minutes without the heating pad. I've thrown in some loads of laundry and even emptied out the dishwasher, but just being on my feet or bending down seems to really stir up the pain. I have really missed my mom being here to bring me food and water, remind me to take my medicine, and to keep up with all the everyday stuff while I rest. But I guess everyone has to grow up sometime. It's like God was saying to me, "You don't need your mom because you have your Father."

So maybe that's the lesson here. Maybe I needed to struggle on my own because I needed to stop saying, "I want my mommy," and realize, "I need my Father!" And He's been here. In the middle of the night when I didn't know how I was going to make it another moment from the intense pain. When the antibiotics had me so sick to my stomach I thought I would faint. When it seemed like no one really understood what I was going through. He was here, just like He promised. And maybe I'm stronger now. Maybe next time I need strength, nurturing, and a little comfort and compassion I will remember this experience and say, "I need my Father; and I know He is here."

A Tootsie Roll Life

Originally Posted Thursday, October 30, 2008

I have to be honest with you...I'm frustrated, I'm angry, and I'm discouraged. I'm not ready to "curse God and die" or anything, but I'm really at the end of all human wisdom, energy, and determination to get help with my medical issues. It has been a long time since I've felt this little confidence in doctors; there have definitely been times in the past when, for good reason, I have completely given up on conventional medicine. I remember when I was 19 years old and had been having a major health crisis for months (which I only recently discovered was caused by narcolepsy with cataplexy). My parents had taken me to every specialist they could find, I'd had every test imaginable, I'd been accused of having psychological problems, and I'd even been told by my friends that I was suffering due to sin in my life (my friends and Job's had a lot in common), and still no one had an answer for me. I can remember as if it were yesterday that as my dad and I walked out to the car after a particularly frustrating doctor visit, I begged my dad to stop taking me to doctors. I told him I would rather suffer with whatever is wrong with me than go through the agony of another unproductive visit where I ultimately was blamed for causing my own symptoms. I'm pretty much at that point again. I'm ready to flush all my medicine down the toilet and just do the best I can on my own.

I know that probably sounds pretty drastic to you, but it's truly where I'm at. I have had every test done and seen every specialist available to diagnose this abdominal pain, digestive issues, and now urinary symptoms. I met with a surgeon today whose brilliant deduction was that I have a benign tissue tumor under my left rib cage that somehow is causing the pain in that area, as well as all the pain in my lower back. His explanation for all the other symptoms? Of course, those things are completely unrelated to this issue. Hello! This does not make sense. My body is not made up of several independent sections; all the organs, glands, and other tissue in my body is interrelated. That seems like very basic, common sense to me. Why can't any doctor look at me and see a whole living organism? I am not a pancreas; I am not a gallbladder; I am not a hypothalamus gland in the brain; I am not a colon. I am a person - a sick person - and I am not being helped. I'm being financially, emotionally, and physically drained. Yet, I am getting worse. Perhaps at my autopsy a medical examiner will discover what it was that was making me sick. It really seems that will be the outcome.

I have 3 more appointments with specialists coming up that I'm very, very tempted to cancel. I just had to change primary physicians for the fourth time this year. I'm still in pain and have no reasonable explanation to determine what is causing it. And just to make things even more wonderful, I have now been determined to be "morbidly obese." What a lovely label. Everyone wants me to have weight-loss surgery; they claim it will be a miracle cure for all that ails my body. I'm not buying it. I was sick WAY before I was fat. Those of you who have known me longer than a just a few years remember how sick my thin, athletic body was before the dreaded weight gain began. I actually now weigh over TWICE what I weighed when I got married almost 10 years ago. I don't even recognize myself anymore. And, of course, although this miracle surgery will supposedly make me healthy, my insurance company will not consider paying one penny toward the surgery. I have to come up with $15,000 before I can even have this wonderful surgery, where either a saline-filled band is permanently installed around the top section of my stomach in order to deprive me of nutrition; or, where they slice off 3/4 of my stomach. Does anyone else think this sounds rather drastic? But this is the only option I am being offered at this point.

The only reason I am even considering it is because I can't stand the sight of myself for one thing, and because it will be refreshing to see how all these doctors explain my health problems when I am no longer overweight. They won't be able to blame my illness on obesity anymore. I predict I will suddenly be referred to doctors in the psychiatric realm. After all, if a fat girl is sick it's because she's depressed and sits around overreating; if a thin girl is sick and they can't figure out why, it's because she has psychological issues. But at least I won't cry every time I look in the mirror, so I guess that's a plus. So if you know anyone who needs to shelter 15 grand for tax purposes, I'm accepting donations for the cause. I mean, if I'm gonna be sick all my life, I may as well look good doing it.

Don't get all worried now. I still love Jesus and believe God is good. I still believe I can glorify Him with my life, even if that is through physical suffering or death. But reality isn't always pretty. And I can't sit around singing "Praise You in this Storm" 24/7. I'm going to have bad days; this particular one just happens to be available for public viewing. Don't pretend you haven't been down before; in fact, don't pretend at all. I'm tired of pretending....I spent the first 20 years of my life trying to pretend I was living up to some person or some group's ideal of what it means to "live for God." I've had enough of that. I'm ready to be authentic and to live a Tootsie Roll life (same on the inside as on the outside) instead of a Tootsie Roll Pop life (a hard candy shell covering up what's really on the inside). I promised you that I would be honest in this blog, and this is as honest as it gets, my friend. The cool thing is that God already knows my heart, and He still chooses me and loves me as I am. How cool is that?