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!

Memories

I have short term memory loss. I have short term memory loss. I have short term memory loss. I have short term memory loss. I have short term memory loss.

Or at least, that's what I tell people. Actually, I have narcolepsy. And one of the symptoms I experience from the disease is automatic behavior. The best way to describe that is my brain takes little naps throughout the day while my body is still able to function somewhat normally. You may be having a seemingly routine conversation with me, but I probably won't recall it later. There are entire blocks of time for which I have no memory. Family members and friends will refer to something I said or a fun activity we enjoyed, and I will have no idea what they're talking about. I once washed, dried, folded, and put away a load of laundry and spent hours the next day trying to find my pile of dirty clothes.

But lately it's just been getting scary. I've been leaving the stove burners on for hours, forgetting to shave one of my armpits, and forgetting to finish things I started - not knowing they weren't finished. I even answered a business call the other day where the person told me her name and I followed up immediately with, "May I ask who's calling, please?" I'm starting to feel like an elderly person with dementia that shouldn't be left alone.

But this morning I discovered a horrifying new aspect to my automatic behavior: sleep eating. When I walked into the living room this morning, there were crumbs all over the place - I walked through a big pile of what appeared to be chocolate cake crumbs, and there were crushed crackers all over the chaise lounge. While I was getting angry at my husband for making a mess I suddenly remembered a dream I had last night. I dreamed I had fallen asleep on the chaise and woke up with a piece of cheese stuck to my chest and crackers stuck to my thighs. *Light Bulb!*

So my next thought is, "How long has this been going on?" I drastically changed my diet last year to eliminate grains, sugar, and other foods that feed fungus in the body. I lost over 40lbs and greatly improved my chronic health conditions. But then the weight loss came to a crashing halt. I had my metabolism tested, I keep insisting to my doctor that my thyroid must still be off, and I've had some relapse in my health. Is it because I'm eating God-only-knows-what while I'm asleep? You've got to be kidding me.

I guess I need to put locks on the fridge and pantry at night. And get an alarm that warns my husband when I get out of bed. This is getting ridiculous! Anyone have any other ideas? P.S. If you give me a great idea, don't be offended if I don't remember it later. :) I wish I were joking.