You're Fired!

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

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

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

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

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

These Four Walls

I'm only 34 years old, so people probably don't think of me as a "shut-in." When I was growing up, that's what we used to call old people who couldn't get out of the house. But that pretty much describes me. I can't drive and can't leave the house, even for a walk, without having someone with me. Want to know what it's like? In a word, lonely.

It puts a real damper on your social life when you can't just pick up the phone and call a girlfriend to meet you for lunch. To be honest, I'm afraid to make new friends because I've been rejected so many times by people who don't want to deal with the high-maintenance friend that requires a wheelchair, medication, and an instruction manual to go anywhere. So my friends are people I talk to on the phone or chat with online. Virtual people, really.

I try to stay in touch with the world through the internet, books, and TV. And the highlight of my day is when my husband comes home from work because I get to see a real live human being. Sometimes I even get to have a conversation with him if he's not too tired from being among Real People all day. Once in a while he'll call me on the way home and ask if I want to go out to dinner. If it's a pretty good day I'll take a shower, put on clothing one would wear in public, and do my hair and makeup. Then I get to pretend for about an hour that I'm a normal person doing normal things.

Honestly, sometimes I feel like the world has forgotten about me. That I don't really matter in the grand scheme of things. So I look for little ways that I can make a difference from inside my four walls. Things like writing this blog, sharing info on social networking sites, and singing once a week in my church choir with all my heart and voice. The rest of the time I fight those feelings of loneliness and desperation by listening closely for the voice of the One who knows me best and loves me most. I am His Treasure, and I am precious in His eyes.

Passing the Torch - A Tribute to Molly Mizerak

Molly Mizerak
8.18.1962 - 6.1.2011

"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith..." -Heb 12:1-2

In just a few minutes, hundreds of people in the Loudoun County, VA area will gather at our former church to celebrate the life of Molly Mizerak, who entered her eternal home in Heaven this past Wednesday after a 3.5-month battle with an aggressive brain tumor. Since I cannot be there in person, I have decided to take a few minutes to remember what she meant in my life and how she has influenced me both in her life and her death.

1. Molly knew Jesus and His Spirit radiated through her. You couldn't be around her for very long without feeling like you were in God's presence. It was evident that she spent time with God and that she was filled with His Spirit. She was like a light in a dark room, and you just wanted to be around and soak in that light.

2. Molly studied the Bible and used the Word to minister to others. She taught me about the power of the Scriptures to overcome spiritual warfare and defeat the Enemy's attacks in my life. She encouraged me to participate in Bible studies when I was struggling with discouragement and depression in my life due to chronic illness, and she even went out and purchased the study books and brought them to me! She knew the power that the Bible had in people's lives.

3. Molly got involved in people's lives and didn't consider their moments of crisis to be an interruption, but an opportunity to share the love of Christ. I can remember calling Molly in the middle of the night to pray with me, share Scripture with me, and encourage me. She was the first one to show up at the hospital when I was admitted and the one bringing me to a prayer service for healing, like the men who carried the paralytic to Jesus. She didn't just talk about spiritual things - she lived them.

4. Molly worshiped with abandon and was sensitive to the Holy Spirit's leading at all times. I can remember a clear change in the power of our worship services shortly after the Mizeraks came to our church. Molly always entered into worship with her whole heart, and it led others to a more open heart as well. She never hesitated to share a word about how God was working in her own life and had a very humble and loving way of admonishing others when it was needed.

5. Molly was real and authentic about her walk with God. She was very willing to share her own struggles with anxiety, unforgiveness, and spiritual warfare. She explained how God delivered her and how the Enemy continued to attack her in these areas. It was refreshing and encouraging to know that I was not alone and that someone who clearly loved God as much as Molly experienced her own spiritual battles too.

A few years ago when I was asked in a Bible study to name the 3 most influential people in my Christian walk; in addition to my parents and my youth pastor, I immediately thought of Molly. She influenced people wherever she went and used every day circumstances as moments to teach others. And her faith in the midst of these past few months as she struggled with her health was an example to me and countless others. We will only know in eternity how many people came to Christ or grew in the faith because of her story.

Since her death, reading and hearing the things that were said of her life is a true challenge to me to live my life in such a way that I would be able to leave a testimony of faithfulness for others to follow. Considering Molly's legacy, I am reminded of an old Steve Green song:

Surrounded by so great a cloud of witnesses
Let us run the race not only for the prize
But as those who've gone before us
Let us leave to those behind us
The heritage of faithfulness passed on through godly lives

Oh may all who come behind us find us faithful
May the fire of our devotion light their way
May the footprints that we leave
Lead them to believe
And the lives we live inspire them to obey
Oh may all who come behind us find us faithful

Molly has passed the torch of her testimony to so many of us left behind. As she cheers us on from heaven, I hope we will accept the challenge and live a life of faith that we learned from her remarkable journey.

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