Guest Post - Deanna's Story

I am honored today to do a guest post for fellow- spoonie Ashley on her blog Searching for Health. Ashley resides in beautiful British Columbia with her husband and 2 dogs. She was diagnosed with juvenile hypothyroidism at the age of eight and then re-diagnosed with a thyroid conversion problem at the age of thirteen. In 2008 she was finally given a proper name for her illness; she is hypothyroid with partial peripheral thyroid resistance. Searching for Health is Ashley's forum for sharing information on thyroid resistance and empowering individuals with chronic illness to live their healthiest life.

Ashley shares the stories of others on Mondays for a series she calls "My Story Mondays." You can read my story by clicking here:

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...

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

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

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.