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.

Easy Button - The Conclusion

So, whatever happened with my search for the Easy Button? I'm sure you're dying to know "the rest of the story." I am too! I don't think there IS an end. But there's definitely a lesson in there somewhere. I've been praying for over a year now that God would "show me great and mighty things I do not know" in regard to my health, our business, and my marriage. If you've read previous posts, you know I have these "333" sightings all the time and use them to remind me of Jeremiah 33:3. Each time I see the triple 3's, I pray that request to God. The past 18 months have been very difficult and very uncomfortable. In my experience, if you keep trusting God through times like these, it usually results in God doing a great work in your life. But I'll admit it: I can be impatient. And God and I have had some pretty heated conversations over the past several months. I even asked HIM about the Easy Button. And here's what He told me:

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." Matthew 11:28-30

He kept giving me that passage, and I didn't get it at first. But then I changed my outlook and decided to trust that God had a purpose in all of this. I still don't know everything He has planned, but I started to see that he'd been answering my prayers all along. Without the recent seriousness of my health condition, I don't think I would have had the motivation to take charge of my health like I have. After just a few months, I have seen amazing improvements in my body. I believe there are better days ahead. When we moved from our beautiful home, I was hurt and angry. But the house we live in now is within 15 minutes of our clients and my doctors. And we live within a few miles of all the health food stores where I do a lot of my food shopping. We have a much smaller yard and home to take care of. This has taken a huge amount of stress off my husband, who had to drive at least an hour to get home from work every day, to take me to the doctor, and to make a special trip out here to get the food I need from the health food store. If I have an emergency at home, he can get to me in minutes, and he's been getting home earlier each evening.

There have been some other opportunities in the area of our business that have opened up because of our move, although we're still waiting to see how God works this out. And although I still don't have the answers about why we don't seem to have a support system in our lives to help out with the heavy burden my health puts on our lives, I am hopeful that the Lord will give us His divine revelation on practical ways we can lessen that burden on my husband's life. God has blessed me with the opportunity to work with a Christian life coach, and she gave me a great word picture to give me hope in this area. She explained that people often say, "that's the last straw," in referring to that circumstance that causes someone to say like Popeye, "That's all I can stands; I can't stands no more!" But what if we could remove things, one straw at a time - one burden at a time? We don't have to solve all our problems with some big epiphany all at once. Sometimes it's just one little solution at a time. And that sounds do-able to me.

So, although I didn't find a big red button to push, I'm starting to understand that quiet voice that keeps telling me, "Give it to Me; let Me carry that weight for you. Just rest in My loving arms and trust." His yoke is easy, and His burden is light.

How the Church Can Minister to the Chronically Ill

Ministering to the Chronically Ill: 20 Ways That Take 20 Minutes
by Lisa Copen

Rest Ministries (www.restministries.com), the largest Christian organization that specifically serves the chronically ill, recently did a survey and asked people to "List some of the programs or resources a church could offer to make it more inviting and comfortable." They have provided a sampling of some of the 800+ responses, all of which could be done in 20 minutes or less.

1. Encouragement emails.
2. Make sure the handicapped stalls in the restroom are functioning and clean.
3. Padded chairs or cushions, room for wheelchairs, and plenty of room for my family to sit with me.
4. Be open-minded about a support group for the chronically ill like HopeKeepers. It would make me feel very special, knowing that there is an understanding of people's needs that are not always visible.
5. Add more disabled parking, even if they are temporary spots.
6. Educate the ushers that people arriving late may have difficulty walking or getting out of cars and will need some assistance.
7. Ask volunteers to call people with chronic illness just to check on them when they don't make it to services.
8. When suppers are given, recognize that I may need help getting my meal--or at least understand that I won't be able to wait in a long line.
9. Be gentle when giving people big hugs. It can topple over or hurt a person.
10. Have a video tape of the service, not just a live web cast. Not all our computers work that well.
11. Make sure that the church doors aren't too difficult to open or at least have mechanical assistance if they're unusually heavy.
12. Stop telling me that if I really believed and had faith I would be healed by now. Please don't insist how good I look, because I know for a fact that I look terrible and miserable that day.
13. Offer me ways to serve within the church that can be performed regularly, but not on a set schedule. I still want to contribute, but I need some flexibility so that I can do a job when I feel well enough to do so.
14. Have sermon notes available so I can listen later or even just review what I didn't catch the first time.
15. Acknowledge National Invisible Chronic Illness Awareness Week. Rest Ministries has a nice book list of top 100 Christian books for the chronically ill. It would make a nice display in your bookstore that week.
16. Just mention chronic illness occasionally! Don't forget to talk about it in sermons as one of the challenges many people face just like unemployment or divorce.
17. Have Christian volunteers from church that will clean house for small fee. Some have offered to clean my house, but I cannot accept charity yet, but neither can I afford to pay a regular house cleaning service.
18. Help with some of the small costs of providing encouraging books and resources for the church library the chronically ill can check out.
19. Remember how many caregivers are in the church, not just caregiving for their parents, but also for their spouses or ill children.
20. Have copies of sermons for free on CD or computer.
Find over 500 ways to encourage a chronically ill friend in the book "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend" at www.beyondcasseroles.com
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I know that some days can seem like more than you can handle. Remember that the Lord promises to never leave you or forsake you. Cling to that. Even when you don't feel his presence He is still there. I tell my 6-year-old son that God is working "under cover." I know I am each day, especially righr now!

Blessings,

Lisa Copen, Rest Ministries Founder
Rest Ministries Chronic Illness Pain Support

Easy Button - Continued

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

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

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

To Be Continued...

Where's The Easy Button?

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

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

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

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

To Be Continued...

Wahoo! Cheesecake

A lot of people say that the Phase One (www.knowthecause.com) diet is too hard or too restrictive. But I think that if you have delicious foods to eat, made by replacing "forbidden" ingredients, you will find that it's not as difficult as you think. I had this cheesecake during my first 30 days when I was staying with my parents - my mom made it for me - and it was heavenly! Tonight is my first time making it myself, and I can smell the crust baking right now. Here's the recipe for a grain-free, sugar-free, Phase One-friendly cheesecake:

Crust
2 cups finely ground walnuts (other nuts can be used)
3 T. organic, unsalted butter
2 T. cinnamon
Stevia, to taste (optional) You will need very little as it goes a long way

Combine ground nuts, butter, cinnamon, and stevia using a pastry blender or fork
Press into 9-10" pan
Bake at 350 degrees for 12 minutes

Filling
12 oz. organic cream cheese
2 eggs
1 T. lemon juice
1/2 cup organic heavy whipping cream
Stevia, to taste

Combine cream cheese, Stevia, lemon, and 1 egg; blend until smooth
Add 2nd egg
Fold in whipping cream
Pour into crust
Bake at 350 degrees for 35-40 minutes
Cool to room temperature (top will crack)
Refrigerate minimum 2 hours.
Top with fresh berries

The crust just came out of the oven, and it smells great! I like to let my cream cheese sit out to get to room temperature before mixing, but it should be ready now. If you make this recipe, let me know how you liked it!

Roasted Cinnamon Almonds

People have asked me for some Know the Cause Phase One Diet recipes. The following is actually in the cookbook that you can order from knowthecause.com, but I'll post it here. It's one of my favorites because it's very simple and something I can take with me to the movies, on a road trip, or to a sports event so that I won't be tempted to eat something at one of the concessions:

Roasted Cinnamon Almonds

1 egg white
1 tsp cold water
4 cups whole, raw almonds
1/4 cup stevia powder
1/4 tsp salt
1 T. cinnamon
Coconut oil

Beat egg white and cold water until frothy.
Mix in nuts until all are moistened

Mix dry ingredients in separate bowl.
Sprinkle over nuts until coated.
Grease jelly roll pan (small cookie sheet) with coconut oil.
Spread nuts evenly over pan.
Bake at 250 degrees for 30 minutes, then turn nuts over and bake another 30 minutes

I've also used pecans for this recipe, and they were very good also.

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.

Greatest Hits - What You Should Know Before You Head to the ER

In honor of Invisible Illness Awareness Week, I am reposting the following that I blogged last year when I was, ironically, hospitalized for pancreatitis during Invisible Illness Week:

"What You Should Know BEFORE You Head to the ER"

Originally Posted Thursday, September 11, 2008

Here I am in the hospital...again. Ironically, this is Invisible Illness Awareness Week, but I've been too ill to participate in any of the BlogRadio conferences I've been looking forward to for months. Instead, I'm lying in a hospital bed wearing a sweaty hospital gown, having not bathed or washed my hair in 3 days, and worst of all, I haven't eaten or even had a glass of water in 48 hours! Of course, I can't stop fantasizing about a bacon cheeseburger, so if only to distract myself, I think this is the perfect time for me to editorialize on how you can be your #1 advocate in an acute illness situation, especially when that illness seems to be invisible to medical professionals. Hold on to your bedpans, ladies and gentlemen...here we go.

1. First of all, never go to the hospital alone. Bring along a close friend or family member that knows about your health history, and make sure it's someone feisty and bold enough to speak up on your behalf. Even the most stubborn, self-confident person can turn into a pitiful puddle of surrender when faced with severe pain, weakness, or strong medications.

2. Don't go into battle unarmed. Bring a detailed list of all your medications and how and when you take them, as well as the actual medications themselves. Also include a list of any chronic health conditions, allergies, and the contact information of any doctors who are currently treating you. Don't trust this information to memory.

3. Bring a "comfort item." For me, this is my mp3 player, loaded with some of the most encouraging songs I know. When you're lying in that bed waiting for hours for that first dose of pain medication, there's nothing better than being able to focus your mind on something positive. The TV doesn't do it for me, and it doesn't help to hear the medical staff outside your curtain laughing, gossiping, and ordering dinner when you're struggling not to make a deposit into the emesis basin.

4. Rehearse your response to the question, "What brings you here today?". Studies show that doctors ordinarily stop listening to you after the first 30 seconds, so find a clear, concise way to get the most important information into their mind as quickly as possible, and pause until they make eye contact with you. It's amazing how doctors can focus their diagnostics and treatments on an obscure symptom and ignore the big picture, simply because of the way you presented your case.

5. Ask LOTS of questions, and if you don't understand their jargon, ask them to say it in simple layman's terms. Don't be intimidated by their education; no one knows more about your body than you do! Remember to find out why they are recommending a particular course of action, what the possible side effects may be, and whether they are aware of your health conditions or other medications. Just because it's in your chart doesn't mean they know about it.

6. Don't accept any treatment that you don't understand or did not make your own informed decision to accept. This includes the drawing of blood, starting an IV, and especially allowing yourself to be injected with any medication. You would be shocked to know the number of times I have stopped someone as they were about to inject a drug into my IV that I am allergic to...even though it was listed on my chart or even my allergy bracelet. Ask them to state aloud the name and dosage amount before they just shoot you up. Doctors and nurses make mistakes...don't just lie back and expect them to take care of you.

7. Stand up for yourself. Don't be bullied into believing "it's all in your head" when they haven't been able to diagnose the problem. Ask what other tests can be done to take a second look. Insist they draw blood and repeat tests if you've been there for hours and are feeling worse; something may have changed since that first blood draw. Ask leading questions to make them think about other possibilities that they haven't thought of yet. Repeat back to them what they said in your own words; not only will this ensure you understand, but it will also give them a chance to hear their position restated by someone else, which often causes them to realize it doesn't make sense.

8. Use respectful approaches to disagreeing with your health care providers. Rather than expressing anger, try disappointment. For example, "I understand you have a lot of cases you're working on at the same time, but I am really diappointed that I have not yet had a chance to see my treating doctor. Could you please check to see if he/she has even a brief moment to stop in?" Rather than accusing, try questions like, "Is it possible that something was overlooked? Could you ask a colleague to review that x-ray with you a second time, just to be sure?"

9. Don't be afraid to make suggestions as to the course of diagnostics or treatment. If you think of something that may make a difference, respectfully bring it up. The patient is THE best source of information that contributes to the diagnosis of his illness. Don't hold back facts, symptoms, or history that you might find insignificant or embarrassing; you never know what that one missing piece can do to fill in the puzzle for that doctor.

10. If you truly believe your assigned provider is neglecting your care, has made a snap judgment about you that is interfering with his objectivity, or seems unwilling to allow you participate in your own health care treatment, bring in reinforcements. Ask to speak to a more senior doctor, such as an attending physician. Call your own family doctor and ask them to step in on your behalf. Sometimes if you approach your doctor directly about what you feel is happening, they will ask a colleague to take over the case. Keep in mind how you would feel if someone was suggesting you weren't performing well in your area of expertise.

11. Trust your own judgment. If something feels wrong or uncomfortable, if you feel you're being rushed or pressured into something, or if you have a strong suspicion you know what could be causing your symptoms, listen to that voice. Ask them to slow down, to explain things again, or to give you moment to think or discuss the issue with someone you trust. You are in charge; you don't have to turn over complete control to any medical professional. Don't sit on the sidelines; get in the game! Remember...there is no one more concerned about your health than you are.

Now...about that burger....

Seminars & Speakers for Invisible Illness Virtual Conference

I just attended a seminar on issues relating to chronic illness, and I didn't even have to leave the living room. This week is Invisible Illness week, and those of us who deal with chronic illness or have a loved one who has chronic illness understand how difficult it is to travel to or sit through a normal conference. But this conference can be listened to online through blog radio from the comfort of your own home. I heard from Jennifer Jaff, Esquire, an attorney advocate for people with chronic illness. She spoke about health insurance and pre-existing conditions and gave a lot of practical advice that was very beneficial to people with health conditions and the struggles we have to understand and weed through all the "red tape" involved in insurance, disability benefits, etc. I was even able to call in and speak with the host to ask a question of my own. There are several seminars each day this week, and I'm sure that you or someone you know could learn a lot by tuning it to at least one of these sessions. Check out the information below for details on the virtual conference's schedule, speakers, and topics. The seminar times are listed in Pacific time.

09 Seminars & Speakers

Construction Zone

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

You may have noticed that my blog is undergoing a facelift right now, so please try not to judge the content by the current layout. Not being an html wizard, I haven't figured out yet how to adjust Blogger's 2-column template to work with my new 3-column background. It makes it pretty difficult to read the blog content right now if you're actually viewing the blog itself, rather than reading it through your RSS feed, email, or Facebook. If anyone reading this takes pity on me and knows how to fix this, I welcome your assistance.

Actually, my entire body is also "under construction" right now. I'm doing a major detoxification of my gastrointestinal system, and I'm also following a very strict dietary protocol to rid my body of mold, mildew, and fungus. I know that probably sounds pretty bizarre - it did to me when I first started hearing about it - but I've begun to understand that most illness and disease comes from fungi infiltrating tissues and organs in the human body. The reason we don't know about it is simply that medical schools mostly focus on bacteria and viruses being the cause of disease. They simply do not teach doctors about mycology, the study of mold, mildew, and fungus. Don't believe me; research it for yourself. Read The Fungus Link by Doug Kaufmann, and check out his website and/or TV show, "Know The Cause." Go to http://www.knowthecause.com to find out where to watch his TV show in your area. You can also watch the show live on the website.

So, please don't judge MY content based on MY layout either. I'm a work in progress, and it's going to be a long, hard road. I believe God has lead me here and that His hand is guiding my steps. And I believe that this path leads to a healthier future for me. Please continue to pray for my healing and for deliverance from the oppressive world of medicine and pharmaceutical drugs. I can't wait to see what God has in store!

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.