A Fungus Among Us

Last fall we moved into a new house. We knew there had been a leaky roof that caused the addition to rot and required it to be completely redone. We didn't think much about it since the damage had been repaired. We also had a problem with the dryer vent backing up and allowing moist air from the dryer to come into the house. It bothered my allergies, but we finally got it fixed and thought that was the end of it.

A few weeks after moving in I was hospitalized with a case of pancreatitis. Although I don't drink or take drugs, I eat a healthy diet, and despite having every test in the world on my liver, gall bladder, upper and lower GI tract, they could find no cause for the pancreatitis. Then, a month later I was hospitalized for pancreatitis again, and they found ulcers in my upper stomach area. We assumed it was related to medication I was taking for narcolepsy with cataplexy, so I stopped the medications. After a couple months of eating a strict diet of soft foods and taking probiotics and L-glutamine, I seemed fine.

Then, a month ago, the painful symptoms of pancreatitis and stomach ulcers returned along with bleeding sores, Chron's-like symptoms, and the inability to eat solid food. That's when I realized this was my third GI flare since moving into this house. I knew there had to be a connection. So we did a home mold test kit. You can see the photo above of the mold spores that grew from our air samples in two different rooms. So I talked to my doctor and showed her this article about what inhaling mold can do to the body, which includes respiratory, digestive, cardiac, and even neurological symptoms. Scary stuff! She put me on a 10-day course of the antifungal medication Diflucan. After 4 days, I felt much better and was able to eat solid food for the first time in 3 weeks.

But now the medicine has worn off, and I am in agony again. We spent the last 3 days making huge batches of chicken stock and broccoli cheese soup in this huge 22-quart pot my husband found.

I spoke with someone at Healthy Perceptions an air and water purification company, and they told me that because I have a mold allergy, due to my symptoms since we moved in, and - based on the results of our mold test - since we have enough airborne mold to cause concern, they recommended their Zone Air Purification system. We purchased 3 of their Aclare Air Purifiers to treat the air in our home.

Because I am perfectly miserable and have been for over a month, I can't wait until the air purifiers get here and I can start feeling better. One of our dogs, Xander, has been very sick with respiratory issues as well. He has no bacterial or viral infections and allergy treatments have not helped. We believe the mold is affecting him as well. We're treating him with natural antifungals and assisting his congestion and inflammation with nettles and eyebright and using eucalyptus oil on his ears at night to help him breathe. I feel so badly for him!

I'll keep you updated on how we both feel after we get the air treatment units!

You're Fired!

Two minutes into my appointment my narcolepsy specialist basically pulls a Donald Trump and tells me he no longer wants to be my doctor. Why? Because he just found out I'm taking hydrocortisone for severe adrenal fatigue. He tells me there's no such thing as adrenal fatigue and that I'm getting "bad information" from my doctor. He said, "You do NOT have adrenal disease. Have you ever SEEN what a person looks like who ACTUALLY has adrenal disease"? To which I reply, "Yep. Every time I look in the mirror." I also told him that I was not asking his advice on hormone-related issues, just as I don't ask my hormone specialist to treat or advise on my narcolepsy.

I've butted heads with this doctor before over my holistic and integrated approach to medical treatment. But he's used to "knowing everything" and having patients just blindly accept his advice. The problem is, the drugs he had me on caused me to gain 70 pounds, made my depression worse, gave me kidney stones, atrial flutter, stomach ulcers, tooth enamel damage, etc. At one point, I had to decide that the pharmaceutical cocktails were only making me worse. He's had a bee in his bonnet ever since.

Ordinarily, I would have already said "sayonara" to a doctor with such an obvious god complex. I mean, I don't drive ten hours round-trip to see this guy because he's so warm and fuzzy. The problem is, he's the only doctor I've found that is knowledgeable about narcolepsy with cataplexy and is willing and able to prescribe Xyrem, the medicine I take that helps me to get restorative sleep. It's the ONLY narcolepsy-related pharmaceutical that I take, and I have found NOTHING else that comes to close to working well for me. In addition, I'm smack-dab in the middle of my Social Security Disability case, and he's the main doctor that is providing documentation of my disability.

So three minutes into my appointment, I go into a full cataplexy attack. Meanwhile, he's telling my husband that 5-htp, which I'm taking instead of antidepressants to help treat catapexy, killed a bunch of people several years ago. Total lie. And that it comes from China. Total misinformation. I don't know if he learned his scare tactics from the democratic party or what. There was a tainted batch of L-tryptophan that killed some people many years ago. But 5-htp is NOT L-tryptophan. And the company that makes it does not get their ingredients from China.

Two cataplexy attacks later, I leave with the answer to only ONE of the narcolepsy-related questions I needed addressed at this semi-annual visit. So he did at least decrease my Xyrem dose to address the sleep eating problem. Apparently this is common when your dose is too high. Who knew? I've gained about 15 pounds since I started sleep eating, so at least one positive thing came out of the visit. But now I have start all over with a new doctor, after I had to fight my HMO to get special permission to go outside my service area to see THIS winner. If anyone knows of a narcolepsy specialist in the Northeast Florida area that doesn't have H.U.B. Disease, AND is knowledgeable about Xyrem, please let me know!

Distractions

"It is our goal at Elevation [Church] to offer a distraction free environment for all our guests..." That was the response from a church who has found itself in a media firestorm after reportedly escorting a mother and her young disabled son from the Easter worship service when he shared an audible "Amen." My initial response was one of shock and anger because I, too, have been told that I was a distraction due to my health issues and was asked to leave my Christian college where I was studying for the ministry. I remember thinking, "Sure, I have chronic illness, but don't I deserve to have a life too?"

I really wanted to be sure I had the whole story and not just a bunch of one-sided media hype. When I spoke with Campus Pastor John Bishop, he admitted that "distraction was a poor choice of words" in this case and that they were trying to communicate that anyone exhibiting distracting behaviors like "ringing cell phones, people leaving from the front row and trying to go back to that same seat, or other loud noises" was encouraged to use the overflow area, which he says is about 20 feet from where Helms and her son were seated before they were relocated. According to Bishop, Helms was discreetly approached by an usher he describes as "an incredible man" on two occasions to make her aware the overflow room was available, but when her 12-year-old son, who has cerebral palsy, continued to make loud, unintelligible sounds (his mom says he was saying "Amen"), they were asked to move to the area where they could "have the exact same message and experience" without disturbing others. The pastor also explained, "There is no rule that keeps anybody out of the auditorium" and that "most people will remove themselves" to the overflow area if they are in one of these types of situations.

I'm a preacher's kid, so I understand the need for things to be done "decently and in order" and especially for people to have an opportunity to hear the life-changing message of the gospel. But I have to wonder where we draw the line. I was assured that Elevation Church doesn't discourage others from shouting "Amen" or being expressive in worship...unless it becomes a distraction. I guess because people could not understand Jackson Helms' expressions of worship, it was unacceptable. I'm just not sure what exactly should have been done in that situation. And on a personal note, I'm often afraid that my cataplexy attacks could distract others who may think I've fallen asleep, or that I really shouldn't sing in the choir because of the possibility of experiencing muscle weakness and collapsing before the congregation. Should I just not serve at all so I don't disturb anyone's experience?

This was a tough topic for me because it hit so close to home. But I can't help but think it's so easy to view people and their problems as a distraction instead of an opportunity for us to have compassion, to reach out, and to even learn from them. Even Jesus' apostles felt that children wanting to see Jesus were a distraction, but Jesus said, "Let the little children come to me, and do not hinder them." And when Jesus was preaching, some men tore off the roof to lower a paralyzed man down to be touched by the Healer. I bet that wasn't on the Order of Service!

I'm sure Bishop and the usher involved weren't trying to embarrass anyone or cause them to feel unwelcome. And from the statement the church later issued, it's clear they have programs for those with special needs and are doing more to learn about how to provide a better experience for them in the future. In 18 years of living with chronic illness I've learned that people do not understand what it's like to live with illness or disability, and they probably never will unless they experience it personally or through a loved one. They'll likely never appreciate the valiant effort it takes physically and emotionally for someone like us to even make it to a worship service. But we can all be a little more understanding and loving, realizing that church is not a building or a well-orchestrated performance, but a group of people who love the Lord and want to grow and share our lives with others like us. But life is chaotic, it's loud, and it's sometimes distracting to our vision and expectations. Let's make room for those distractions, even if someone tears off a roof now and then!

Setbacks

People with chronic illness know this well: Just when you think you've got a handle on one aspect of your illness, another crops up to throw a monkey wrench into the whole thing. I've recently had a setback with my thyroid disease because I finally was able to convince my doctor to treat me for adrenal fatigue. It's common for people who have gone for years without a proper diagnosis of thyroid disease and/or those who were on a T4 only medication like Synthroid or Levoxyl to develop adrenal fatigue. I've known for years that my adrenals were causing me problems and contributing to my cataplexy, fatigue, and even excessive sweating. But convincing your doctor of that is another matter.

The new doctor at my primary doctor's practice is much more open to suggestions than other doctors I've seen, especially if you bring her some information to back up your theories. I had been trying to get my doctor to run my Reverse T3 for almost a year now, especially after I stopped losing weight on Armour and began having some hypothyroid symptoms again. This new doctor agreed to run it, and we quickly concluded that my body is not absorbing and utilizing the thyroid hormone that I'm taking, which is why I'm not losing weight, why I'm feeling so tired, why I get huge cracks in the heels of my feet, and why it makes perfect sense that my adrenals are failing too. I'm trying not to be annoyed that almost a year was wasted while my know-it-all doc ignored me, and focusing instead on feeling hopeful that this new doc is willing to treat my adrenals with hydrocortisone (HC).

But it's not easy treating the adrenals, let me tell you. For one thing, we're both at the mercy of piece-meal information. The 1st edition of the Stop the Thyroid Madness (STTM) book says to gradually increase your HC up to the proper dosage. But that would give me these incredibly sickening adrenalin rushes, kind of like the feeling you get after you've run a mile as fast as you can. So I asked people on the STTM Facebook page, and the author told me there had been a revision to the book advising you to begin at the full dose right away to avoid the adrenalin rushes. Ugh. So I started over again.

Then my Armour started making me sick. I would get these horrible gut-wrenching stomach pains, along with severe nausea right after I took my Armour. That's when I was advised to cut back on my thyroid meds. So now I feel terrible because I'm on the wrong dose of Armour. I started having one of the worst hypothyroid symptoms that I haven't experienced in almost two years: digestive issues. That's a polite way of saying that I have to run to the bathroom at a moment's notice. So now I'm carrying ginger root capsules around with me 24/7 like the pre-Armour days. I was told swallowing my HC with apple cider vinegar would help cut down on the stomach issues. Nope. The last time I tried that, I felt like someone had kicked me in the gut; and it felt like that ALL DAY LONG. I'll just stick with the ginger root, thank you.

To make a long story long-ish, I'm feeling a little frustrated and discouraged right now because I've essentially had to make myself feel sick in order to make myself feel better. I'm sure that makes sense in some realm of reality, but right now it just ticks me off. I have the energy of a slug and the personality of a porcupine being poked with a stick. So I just keep muttering this mantra under my breath: "A setback is a setup for a comeback. A setback is a setup for a comeback." Now where are those ginger capsules...

Narcolepsy for Dummies

NARCOLEPSY FOR DUMMIES - By Fellow-Narcy, Andrea Clark

Narcoleptics (pwns – person with narcolepsy) suffer from an auto-immune disease whose onset is typically in adolescence, but sometimes earlier. There appears to be a trigger, whether it be a virus or a stressor put on the body, which can cover a multitude of things, but as yet researchers have not been able to really pin it down. It is at that time that the brain appears to destroy a part of itself, which researchers have labeled Hypocretin, or Orexin in some circles. Hypocretin is the ‘control’ chemical that regulates our sleep center in the hypothalamus. Pwns no longer have hypocretin, as the brain has destroyed it during childhood/adolescence.

Let’s use the analogy of the sleep center being much like the automatic transmission in a car. Hypocretin is, for the sake of argument, transmission fluid which helps it move smoothly through the gears. The fluid is necessary to have a properly working transmission and without it the sleep center continually ‘slips’ gears. The brain tries to make educated guesses based on levels of other chemicals.

It becomes a catch-22 because we no longer get consolidated sleep, so the levels of the remaining chemicals in our brain are altered. Our sleep center then becomes active 24 hours a day. Using the analogy of slipping gears, the brain is putting us into REM when we’re awake (giving us hypnogognic and hypnopompic hallucinations); it paralyzes us when we are just falling asleep or awakening, creating Sleep Paralysis. It puts the brain into a state of sleep, but our physical bodies are awake, we are talking and moving about, but have no recall of any of it, creating thus we have Automatic Behavior. It is during automatic behavior that our conversations may or may not be cohesive, and we put the dishes away in the refrigerator, the laundry in the oven, for example.

Regarding cataplexy, which is triggered by emotions and stress, the brain is taking those triggers and ‘guessing’ they are a part of REM, thus causing us to collapse and become paralyzed, just as a normal brain paralyzes us during dreaming so we do not act out our dreams. For those with prolonged cataplexy attacks, breathing becomes shallow and slower, because the brain takes over breathing for us, just as it does during REM. The need for ‘air’ is reduced to a level that is sufficient for little more than the body’s automatic systems to keep running. This can create anxiety which only prolongs the attack. Remembering this will keep you calm. Realize the body is not going to let you suffocate.

Hypocretin can be reproduced in the laboratory, but researchers do not know the mechanism it requires to tell it how much to release and at what times. Currently the only way to get hypocretin to the brain would be through daily injections into the spinal column, as they do not at this time know how to get it to pass through the blood/brain barrier.

Memory and cognitive ability are affected because the brain does not have consolidated restorative sleep. Without us realizing it, the time spent in consolidated restorative sleep is just about the most important part of our day as this is the time the brain does its all important maintenance, which is necessary to process memories and retaining what it learns. It is also the time that the brain puts out the order across the body for all our neurotransmitters that are ‘out of whack’ to snap to and get back into sync with one another. It ferrets out what parts of the body needs healing and sends appropriate messages for the body to work on healing.

It usually takes several years, and in some cases decades, for a pt. to be diagnosed with narcolepsy. Most often they are diagnosed with depression because EDS is considered a symptom of depression. They receive little understanding or support and are often considered lazy, unmotivated, or malingerers. Mild cataplexy is often diagnosed as MS, however tests reveal there is no demylanization.

Hypocretin is the all important crux of the problem. It is a major control chemical and when it is missing, the brain will try to make decisions based on other available information, however misguided that may be. However, with the loss of consolidated restorative sleep, thus being sleep deprived, the levels of other chemicals are all wrong. Therein lies the conundrum – hypocretin would help the brain keep those chemicals at their working best. Our body depletes itself of those chemicals throughout the day and ideally they would return to proper levels when we get truly good sleep. Instead the brain can only guess, and does not restore enough of some chemical or over produces others.

Staying with the car analogy, let’s imagine that the computer system of your car relies on your transmission running properly. If that isn’t happening, you are going to be getting all kinds of wrong information, and you may start to put premium gasoline in your tank, the highest grade of synthetic oil, etc. All nice things which makes the car somewhat pleased in the short term, but let’s face it, if your tranny isn’t right, you’re going to find yourself on the shoulder of the highway, waiting for the tow truck because as it stands, you aren’t going anywhere.

Chariots and Horses

Sometimes I forget just how much I lean on my husband. As a housebound person with multiple chronic illnesses, including narcolepsy with cataplexy , there are a lot of things I just can't do for myself. He is my caretaker, my closest friend, and the person who best understands my limitations. When he's not available to me, it's pretty scary. He's on a missions trip in another country right now, and I've been basically alone except for a person who comes to sit with me at night (lest I burn the house down or fail to wake up from my strong sleep medicine should it begin to burn down around me).

Recently he had a very scary, dire incident with his diabetes, and I had to call an ambulance. In addition to worrying about his life I remember thinking, "What am I going to do if something happens to him? Who's going to take care of ME?" Watching him deteriorate quickly from insulin shock right before my eyes was one of the scariest things I ever had to experience. I just kept praying, "Jesus, help me!" in pure desperation, over and over. Because he's such a strong person and focuses most of his energy on caring for ME, it's easy to forget that he has physical limitations too.

With his being gone this week, I've had a renewed sense of how much I depend on him not only for my physical needs, but also for emotional support for the struggles of life. I've had a couple of melt-downs, especially upon hearing that he's had some really rough times with minor insulin shock on the missions trip. My parents and my best friend, who are hundreds of miles away, have done their best to comfort and encourage me, but God began reminding me today that He is my rock, my shelter, my deliverer, my defender, and my refuge. Even when I'll all alone in the physical sense, He is here to hold me up.

I was struck by how important it was for ancient kings to have an arsenal of strong horses and the best chariots so that they could defend themselves in battle, much like our military today depends upon tanks, planes, and weapons for our defense. But King David wisely realized that he could not trust in any sword, or spear, or chariots, or horses to deliver him because the battle is the Lord's, and He is the one who would deliver them. It's so easy for me to see my husband as THE one who meets my needs, and I'm thankful to have someone like him in my life. But today God reassured me of His presence and that I only have to call on HIS name. Lord, help me to put my trust in You.

"Some trust in chariots, and some in horses; but we will remember the name of the LORD our God." -Psalm 20:7

Repost: Cataplexy 101

Reposted for National Sleep Awareness Week

The following is some information I pieced together from various sources, including my own experience, to explain what cataplexy is and what to do if I have an attack. Most doctors have never even heard of it and have no idea what to do. I started carrying information sheets around with me to hand out to people and especially to give to all my doctors. Feel free to duplicate this information; we need to educate people about this disease.

WHAT IS CATAPLEXY?
Cataplexy is a feature of the sleep disorder narcolepsy. It is a condition whereby the sufferer, or cataplectic, experiences a total loss of muscle control and postural tone. It is likely to be more severe when a person is tired, under stress, or experiencing strong emotions. It is extremely unpredictable both in severity and frequency. The attacks do not necessarily have a fixed schedule; they may occur occasionally but may also occur multiple times a day. Patients may be prescribed antidepressants to control the attacks and may also take a night-time medicine called Xyrem, the pharmaceutical equivalent of GHB, to produce the quality of sleep needed to help control the attacks. It is important for cataplexy sufferers to adhere to a strict sleep and medicine schedule to avoid severe, prolonged attacks.

WHAT HAPPENS DURING A CATAPLEXY ATTACK?
Cataplexy is often confused with epilepsy. The nature of the attacks may vary from individual to individual. The following characteristics of an attack can occur alone or in combinations with others: perceptible slacking of the facial muscles, dropping of the jaw or head, knee buckling, slumping of the shoulders, slurring of speech, blurred vision, or falling to the floor. When falling to the ground, the cataplectic may appear to lose consciousness but simply remains motionless for a few minutes before resuming normal behaviors or drifting into some prolonged sleep. There is no loss of consciousness or awareness of surroundings; the person can still hear, feel, and sometimes see things that are going on during the attack.

WHAT CAUSES A CATAPLEXY ATTACK?
Cataplexy is often caused by strong emotions such as exhilaration, surprise, fear, anger, stress, shock, laughter, anxiety, etc., but these do not have to be present for an attack to occur. For this reason, a person suffering from cataplexy will not benefit from “revival methods” often used on an unconscious person. Actions such as yelling, slapping, or shaking should be avoided, and sternum rubs or ammonia inhalants will not be effective and can, in fact, make the attack worse by causing anxiety to the patient.

WHAT SHOULD BE DONE FOR A PATIENT DURING AN ATTACK?
1. It is most important to stay calm, remembering that the cataplectic is conscious and aware of your behavior and that your anxiety can affect the severity or length of the attack.
2. Be sure the individual will not injure themselves by falling and that their airway is not obstructed by the position of their neck/head. There is no need to move the person unless one of the above circumstances presents itself.
3. Unless the person has stopped breathing, has no pulse, or has injured herself in some way, CALL THEIR EMERGENCY CONTACT BEFORE CALLING 911. This contact will know more about the disease than almost any medical personnel and can advise you more on how to respond. If they feel emergency medical personnel should be called, that is the time to call.
4. Avoid drawing undue attention to the situation, which can cause embarrassment and discomfort to the individual.
5. Sufferers have different preferences about what onlookers can do to help. Some prefer to be left alone, while others my need to be supported or helped up. It is common for the person to prefer being left alone to recover of their own accord.

HOW DOES THIS DISEASE AFFECT LIFESTYLE?
Cataplexy can be disruptive to daily living. It can cause embarrassment, loss of confidence, and even detrimental consequences to the patient. Further, it can impair most desired activities such as driving, working out at the gym, or even holding a child, because one can never know when the attack might present itself. Because this is a rare condition, most medical personnel will not recognize it or know how to treat it. For this reason, the patient and their regular caregiver should be relied upon greatly for information about both the condition and also that patient’s particular regimen of treatment.

Soup is Good Food - Broccoli Cheese

I used to HATE soup. Probably because it reminded me of being sick. And there are a lot of days when I don't feel well due to something related to my chronic illnesses. So the fact that I've been eating soup by the gallon for the past few months is quite strange for me. But my best friend came up with a very healthy, VERY tasty recipe for broccoli cheese soup. It's easy to make, easy on my ulcer-ridden stomach (thanks to my cataplexy medication Nortriptyline, the drug that's also the proud sponsor of my cardiac condition and 70lbs of weight gain I'm still trying to lose the rest of), and it's better than any I've ever tasted.

Since I happen to be down with my semi-annual cold right now, I made a big batch and have been eating it for breakfast, lunch, and dinner. I thought you might enjoy the recipe. I'm sure my BFF won't mind that I've adapted it slightly for my taste.

Adapted from Hannah's Broccoli Cheese Soup
Half a stick of organic, unsalted butter
2 cups organic heavy whipping cream
3 cups homemade chicken stock
1 lb. broccoli florets, steamed and cut into small pieces
2 T. Arrowroot powder + 1 T. cold water
Chopped stalk of green onion
Fresh minced garlic, to taste
Sea salt, to taste
Cayenne pepper, to taste
8 ounces yogurt cheese, shredded
8 ounces organic cream cheese, softened at room temperature

Set cream cheese out to soften
Steam broccoli
Melt butter in soup pot
Add cream, allow to warm slowly on low heat
Mix arrowroot and water in a small bowl and slowly add in, whisking gently and allowing to sit until "white sauce" thickens
Add chicken stock
Bring to boil
Add broccoli, chopped onion, and spices
Stir in shredded cheese
Cut cream cheese into small sections and mix in with whisk

You may want to use an immersion blender to mix in the cream cheese, although I don't mind the tiny little lumps. You may also add shredded steamed carrots, along with the broccoli. You can omit the cayenne too, but I like a gentle kick to the soup. Plus cayenne is very good for the stomach, as well as for sore throats!

It makes 5-6 generous servings. I like to store it in Mason jars in the fridge, since I don't want chemicals from plastic ware seeping into my healthy ingredients. It's so gentle on my stomach and very soothing to my cough and sore throat. It takes about 30 minutes to make, and it's very easy to double the recipe for more servings.

Try it and tell me if it's not the BEST soup you've ever tasted! Bon appetit!

Note: This recipe is Know the Cause Phase One Diet-friendly

This post is featured today on the Easy Natural Food blog for Sunday Night Soup Night.

Permanently Disabled

Photo taken from the gun deck at Castillo de San Marcos, by my sweet husband so that I could see it too!

I guess I look like a healthy person. People can't usually tell just at a glance that I struggle with many chronic illnesses. But whenever I want to do an activity where there's a lot of standing or walking, I have to use a power wheelchair to get around. Then I'm suddenly categorized as a "disabled person." But until last Friday, I had never had anyone ask if I am "permanently disabled." The question really threw me.

We were spending the afternoon together in St. Augustine, enjoying the beautiful weather and browsing the little shops. We decided to ask if I would be able to go into the fort with my wheelchair. That's when I got The Question. (Apparently people with permanent disabilities get to go in for free. And if you get a Permanent Disability Pass, you can get into any National Park for free also). I guess it just kind of hit me hard because I had to literally stop and let the fact wash over me that my illness is most likely a permanent condition. I've been trying everything under the sun to change that, and I've definitely been able to improve my condition and my quality of life to some degree. But I'll probably never be able to climb the steps to the St. Augustine lighthouse or go up to the gun deck of the fort ever again. I was feeling a little sorry for myself as I watched from below as my husband took the stairs up to the gun deck.

I've been procrastinating for almost two years on filing for my Social Security disability, and I wasn't quite sure why. But I now realize it's just been a matter of denial. I really hoped that I would never need to claim the status of Disabled. I think I saw it as admitting defeat to my illness. And I'm not a quitter. Never mind the fact that our health expenses and food budget have both DOUBLED over the past two years due to my illnesses and that we could really use that money to offset some of those extra bills. Not to mention that I don't want to be dependent on society, my husband, or anyone else to care for me. But that's just part of my reality. I guess it's time to accept it.

Jay Cutler's New PR Girl?

Anyone who knows me is clear that I am not a Chicago Bears fan. And I'm not a Jay Cutler fan. And maybe everyone is finished eviscerating Jay Cutler for getting hurt in the NFC Championship game and then not continuing to play or not "acting injured enough" on the sidelines afterwards. But I'm still angry, and NOT at Cutler. Who do these people think they are to say he should have gone back into the game, despite what was later diagnosed as an MCL tear? I have had my fill of people telling ME about MY chronic illnesses and how I should behave and feel in the midst of them. This includes family members, doctors, pastors, and friends. I actually live inside my body and experience what it is like to have chronic illness that interferes with my life 24/7. And I've been doing it for over 17 years! I might know a little bit more about what I can handle and what my limitations are than other people.

First of all, I have personally injured my MCL, ACL, and LCL multiple times in my life. If you haven't had an injury to a knee ligament, YOU DON'T KNOW WHAT YOU'RE TALKING ABOUT. It is very painful, and for the first hour or so after the injury, you may feel nauseated, dizzy, and disoriented. Depending on the severity of the injury, you may be able to stand or bear some weight on the leg, but you can't pivot or shift your weight. And a partial tear is much easier to recover from then a more severe tear. So if you have a tear, you're an idiot to go back out there and injure yourself worse, possibly ending your career.

Secondly, Jay Cutler has diabetes. For a diabetic to be a professional athlete is a feat in and of itself. My husband has been a diabetic for over 30 years, and I've been a part of his life for half of that time. A diabetic's body operates completely different than a healthy person's, and small things can have a huge effect. A sudden injury can even suddenly bring on insulin shock due to stress, adrenalin, etc. Could this have something to do with why Cutler appeared to some to be "disengaged" on the sidelines after his injury?

The point is, you don't know what's going on with someone else's body. I've borne the brunt of the most ignorant comments and thoughtless questions about my chronic illnesses. People want to know why I don't "just" exercise or eat less since I'm overweight. Little do they know that I gained 70 lbs in 6 months from one narcolepsy medication, had untreated or improperly treated thyroid disease for 15 years, my body produces 5 times the amount of insulin it's supposed to in response to food - which causes me to store food as fat rather than burning it as energy, and when I perform mild physical exercise like standing or walking for short times and distances my muscles go limp suddenly due to cataplexy. Not to mention that I eat healthier than 99% of the population. You skinny people would DIE if you had to eat the way I need to just to have the energy to bathe and dress myself!

Why don't I drive? Why don't I have a job? Why don't I attend 12 church services a week? Why isn't my house clean and my laundry done? Why don't I have children...do I not like kids? Why do I need a wheelchair to go to a mall or ballpark? It's GOTTA be that I'm just too fat and lazy, right? After all, I'm "too young" to have all these health issues. I'm probably faking it for attention. Or maybe I'm just depressed. Probably I'm not right with God. And I don't have enough faith to be healed. Blah blah blah blah blah.

The bottom line? We can't look at someone and know what's going on "under the hood." And it's really none of our business unless we really care enough to be a part of that person's life as an encourager, a helper, a real friend, and a prayer warrior. If you're just a critic who attacks people because it makes you feel better about yourself or an "armchair quarterback" who didn't have what it takes to make the playoffs, just keep your mouth shut. I say this with all the love of Jesus and a healthy dose of plain truth. Sow some seeds of kindness and compassion. You never know....some day you or someone you love may have an injury or illness. And when that day comes, you may need that harvest in your own life.

"Finally, all of you, be like-minded, be sympathetic, love one another, be compassionate and humble." -I Peter 3:8

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

Deja Vu All Over Again

I've had so many major improvements in my health over the past few months. I've lost 32 pounds, gotten off several medications, seen a drastic reduction in the frequency and severity of my cataplexy attacks, and had a dramatic increase in my energy levels. So, I really didn't see this one coming: the dreaded pain in my side is back. I noticed it creeping in a few weeks ago but hoped it was just my imagination. But one night at bedtime it was so severe that I could not sleep despite the strong sedative I take at night for my narcolepsy. That's when I knew it was really back.

For four years I endured daily pain in my left side. It was a constant pull of heaviness, as if I had a small barbell inside me. Then, at various times throughout the day the sharp, stabbing pains would come. For several days each month the stabbing pain was constant and so severe at times that I would become nauseated. The only way I could function was to stay medicated with various narcotics. Over time, I actually became dependent on the narcotics. The diagnosis was endometriosis. And I had several surgeries to "remove" the tissue that was growing all over my bladder, colon, and other internal organs. But the pain kept coming back with a vengeance. Finally, I found a reproductive endocrinologist that believed most of my pain was not from endometriosis but from two pelvic hernias. He performed a surgery to repair the hernias but also removed endometriosis by cutting out the tissue along with the areas underneath, rather than just by burning it off, which is the typical procedure performed in these cases. After healing from the surgery, I was completely pain-free for over two years.

But with my recent change in treatment for thyroid disease from the substandard drug levoxyl to natural Armour thyroid, my body began performing normal hormone functions again. Unfortunately, I believe this has caused the endometriosis to begin growing again. I haven't had this confirmed by a doctor yet, but I recognize the old, familiar pain. I've been down all week with the pain, unable to stand or walk around much without making it worse. I've tried heating pads and even strong anti-inflammatories that only upset my stomach. But nothing's working. Which is why I'm blogging about this at 2am, unable to sleep again. My doctor tried to blame the pain on "muscle spasms" due to my being overweight, which is classic behavior when doctors don't want to bother with a proper diagnosis. After all, overweight women with unknown symptoms and unexplained pain are surely merely suffering from depression and symptoms caused directly from obesity. Oh, brother! What a cop-out! I'm going back to him tomorrow to strongly suggest he pull his head out of his hindquarters and take me seriously this time. Considering my extensive history, which he didn't bother to consider at my last visit, it's certainly probable I'm dealing with a relapse in my endometriosis.

But this time I'm not having surgery, and I refuse to become addicted to narcotics again. I believe we need to consider my progesterone levels, although I am already taking natural progesterone, and we should probably do an ultrasound to make sure there's no cyst or tumor and that the graft from my hernia repair hasn't become dislodged or anything. And I plan to get a high-quality curcumin (which comes from the spice turmeric) supplement to help with the pain. Apparently I still have some fungus growing in my body, so I will continue to rotate my anti-fungal supplements (olive leaf extract and caprylic acid) and keep sticking to the Phase One anti-fungal diet I've been doing for over 3 months (http://www.knowthecause.com). It would be easy to let this really discourage me and cause me to throw my hands up and surrender to the drugs and surgery solutions the doctors so quickly throw at problems like this. But I know I'm on the right track, although I clearly have a long way to go.

To Make a Long Story Short...

The past month has been very eventful, and I know it's been a long time since I posted - shame on me! I thought it would be a good idea to give you an update on my life and health. Inquiring minds want to know, apparently. Where to begin? Well...it all began in the spring when a friend of a Facebook friend contacted me and referred me to this website. With all my health issues, the one thing I thought was under control was my thyroid disease. But I soon learned that I, like hundreds of thousands of thyroid patients, was on the wrong medication. I found a doctor in my area who prescribes natural thyroid hormone and also believes in taking elimination of symptoms into consideration when adjusting medication levels, rather than just thyroid lab tests. After 8 consecutive months of gaining up to 10lbs/month, I immediately stopped gaining weight. My new doc also started me on natural progesterone to treat my Polycystic Ovarian Disease (PCOD).

Over the next few months, my doctor continued to monitor my symptoms and my hormone levels, adjusting my medicines accordingly. I almost immediately saw a major reduction in two symptoms I'd been plagued with for years: excessive sweating and severe digestive problems. However, I did develop some new heart symptoms which included an elevated heart rate, chest pain, and sudden drops in my blood pressure that caused me to pass out or fall down. I saw a cardiologist and had several tests done to determine the cause of this. We're still not 100% sure of the cause of these symptoms, and I continue to have episodes with my heart from time to time. I'm told there is nothing wrong with my heart, but that I have another condition that is affecting the functioning of my heart.

In August, a friend and I began following The Maker's Diet by Jordan Rubin, which is a way of eating that follows biblical principles concerning food. I lost a few pounds doing this but nothing major. But then, at the urging of my mom, I started watching a television show called "Know the Cause" on the Christian Television Network. The host, Doug Kaufmann, teaches that most diseases actually come from fungus, mold, and mildew rather than bacteria and viruses. He has authored several books on the subject and also has a website: www.knowthecause.com. The more information I heard and saw, the more I believed that this concept made a LOT of sense. I had been urging my doctors for years to find a commonality among all my diagnoses, believing firmly that one person could not have so many separate diseases without them being somehow related. I wanted to "know the cause" instead of just treating the symptoms with drugs, drugs, and more drugs. So I began the Phase One antifungal diet on September 1st.

In the past several weeks I have lost 25 pounds, I have gotten off 4 medications, and I have seen a reduction in the severity and frequency of my heart symptoms and my cataplexy attacks. This is a miracle! For the first time in my adult life I feel like I am getting better! I can see actual tangible evidence of an improvement in my health. That's not to say that I am cured, by any means. I have a LONG way to go before I could ever consider referring to myself as healthy. And there are still serious health issues involving my heart and liver that need to be addressed. But I believe I am on the right path. And that includes continuing to rid my body of mold, mildew, and fungus; getting off as many pharmaceutical drugs as possible, putting only the purest, natural substances into my body - whether it be food, beauty products, cleaning products, etc.; and supplementing with high quality vitamins and nutritional supplements, tailored to my particular conditions and symptoms.

This is absolutely the hardest thing I have ever done in my life, but I am convinced that I am doing the right thing. And I believe that anyone dealing with a chronic health issue can benefit from the information at Know the Cause and from Doug Kaufmann. Please continue to keep me and my husband in your prayers as this continues to be one of the most difficult times in our lives.

This I can say with 100% assurance, though: God's promises are true, and He is faithful. Take Him up on His offers:

"Call to me, and I will answer you, and show you great and mighty things,which you do not know." Jeremiah 33:3

"If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him." James 1:5

Cataplexy 101

I was surprised recently to learn that most of my immediate family did not know what to do when I had a cataplexy attack at a family gathering yesterday. The following is some information I pieced together from various sources, including my own experience, to explain what cataplexy is and what to do if I have an attack. Most doctors have never even heard of it and have no idea what to do. I started carrying information sheets around with me to hand out to people and especially to give to all my doctors. Feel free to duplicate this information; we need to educate people about this disease.

WHAT IS CATAPLEXY?
Cataplexy is a feature of the sleep disorder narcolepsy. It is a condition whereby the sufferer, or cataplectic, experiences a total loss of muscle control and postural tone. It is likely to be more severe when a person is tired, under stress, or experiencing strong emotions. It is extremely unpredictable both in severity and frequency. The attacks do not necessarily have a fixed schedule; they may occur occasionally but may also occur multiple times a day. Patients may be prescribed antidepressants to control the attacks and may also take a night-time medicine called Xyrem, the pharmaceutical equivalent of GHB, to produce the quality of sleep needed to help control the attacks. It is important for cataplexy sufferers to adhere to a strict sleep and medicine schedule to avoid severe, prolonged attacks.

WHAT HAPPENS DURING A CATAPLEXY ATTACK?
Cataplexy is often confused with epilepsy. The nature of the attacks may vary from individual to individual. The following characteristics of an attack can occur alone or in combinations with others: perceptible slacking of the facial muscles, dropping of the jaw or head, knee buckling, slumping of the shoulders, slurring of speech, blurred vision, or falling to the floor. When falling to the ground, the cataplectic may appear to lose consciousness but simply remains motionless for a few minutes before resuming normal behaviors or drifting into some prolonged sleep. There is no loss of consciousness or awareness of surroundings; the person can still hear, feel, and sometimes see things that are going on during the attack.

WHAT CAUSES A CATAPLEXY ATTACK?
Cataplexy is often caused by strong emotions such as exhilaration, surprise, fear, anger, stress, shock, laughter, anxiety, etc., but these do not have to be present for an attack to occur. For this reason, a person suffering from cataplexy will not benefit from “revival methods” often used on an unconscious person. Actions such as yelling, slapping, or shaking should be avoided, and sternum rubs or ammonia inhalants will not be effective and can, in fact, make the attack worse by causing anxiety to the patient.

WHAT SHOULD BE DONE FOR A PATIENT DURING AN ATTACK?
1. It is most important to stay calm, remembering that the cataplectic is conscious and aware of your behavior and that your anxiety can affect the severity or length of the attack.
2. Be sure the individual will not injure themselves by falling and that their airway is not obstructed by the position of their neck/head. There is no need to move the person unless one of the above circumstances presents itself.
3. Unless the person has stopped breathing, has no pulse, or has injured herself in some way, CALL THEIR EMERGENCY CONTACT BEFORE CALLING 911. This contact will know more about the disease than almost any medical personnel and can advise you more on how to respond. If they feel emergency medical personnel should be called, that is the time to call.
4. Avoid drawing undue attention to the situation, which can cause embarrassment and discomfort to the individual.
5. Sufferers have different preferences about what onlookers can do to help. Some prefer to be left alone, while others my need to be supported or helped up. It is common for the person to prefer being left alone to recover of their own accord.

HOW DOES THIS DISEASE AFFECT LIFESTYLE?
Cataplexy can be disruptive to daily living. It can cause embarrassment, loss of confidence, and even detrimental consequences to the patient. Further, it can impair most desired activities such as driving, working out at the gym, or even holding a child, because one can never know when the attack might present itself. Because this is a rare condition, most medical personnel will not recognize it or know how to treat it. For this reason, the patient and their regular caregiver should be relied upon greatly for information about both the condition and also that patient’s particular regimen of treatment.

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

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 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...

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.