Immune System For Sale

I have to eat my words. I was wrong. Very wrong. And yes, I did just admit that I'm not always right. 

My sleep disorders specialist called on Thursday and revealed the results of my sleep study: 

"Keri, we have a serious problem here. You are extremely, extremely tired. You fell asleep each time you took a nap. (If you remember from my last post, I swore I didn't fall asleep once. And still to this day would bet big bucks I was awake the entire time!) Not only did you fall asleep, but you did so in an average of 2.5 minutes. On top of that, 4 of the 5 naps you went into REM sleep--the deepest sleep. So what all of this means is that you have a disease called narcolepsy."

Say what?!?!

"Based on your history of autoimmune diseases (Hashimoto's Thyroiditis and Celiac's), your symptoms, and failure of the sleep study, it all makes sense. So what we do is start you on Nuvigil. It's the Riddalin of the 21st century without the side effects. (What big whig CEO's and shift workers use.) Nothing can cure narcolepsy, but the symptoms are treated through medication to hopefully bring relief."

I was shocked. Totally stunned. And then scared. Thoughts flooded my head: I don't want to be on that type of medication! What about still needing to straighten out my thyroid meds? Will that make a difference? What almost 23 year old is diagnosed with thyroid cancer, celiac's, and narcolepsy all in a matter of 8 months? I'm officially a FREAK!

After this weird "dream" ended and I got a grip on the situation, I went into medicine mode. I read countless studies, experiments from Stanford, publications in the New England Journal of Medicine, and reviewed research conducted by inhumanely smart Chinese scientists.

In a nutshell (and a language we all can understand) this is what I gathered: 

Narcolepsy is a rare sleep disorder causing excessive daytime sleepiness, symptoms of abnormal rapid eye movement (REM) sleep, disrupted nocturnal sleep, and cataplexy. Not much is known about the disease, but in recent years there has been more evidence confirming it to be autoimmune related. As with all autoimmune diseases, your immune system mistakenly attacks and destroys healthy body tissues. Additionally, I was told in high school when I was diagnosed with Hashimoto's that once you have one AI disease, you're very likely to have two, if not 3 at some point in your life. While that isn't true for everyone, clearly I have reached "two's company, three's a crowd," status. Yippe! Ha. 

But back to being a Narc ;) The disease comes from a lack of hypocretin--a hormone that promotes wakefulness. In narcoleptic patients, they are missing the brain cells that produce this hormone. Recent studies are showing a link between narcolepsy and a variant for the HLA (human leukocyte antigen) gene. This HLA gene is what our immune system uses to differentiate between our own cells and foreign cells. Because of this variant, my body is attacking those 10,000-20,000 hypocretin producing cells, out of the billions of cells in my brain, leading to the autoimmune disease. And interestingly enough, I found in my studies that the HLA markers for Celiac's and Narcolepsy are almost identical, leading to more evidence for my diagnosis. 

Are you lost? If not, congrats! That is a lot of science to comprehend. I eventually stopped researching because it was leading to studies about relating Narcolepsy to coming down with other neural degenerative diseases like Alzheimer's, at an earlier age. At that point, I decided I'd had enough of trying to figure myself out. It was easy for a little bit to feel sorry for myself and wonder why it was all happening to me, and allowing panic to set in about all the "fun" I have to look forward to as I grow older. But after a few days, it all began to clear. 

If these are the 3 AI diseases I'm being handed, then in my opinion I'm blessed. There are over 90 autoimmune diseases, and some are absolutely terrible compared to the 3 I have. None can be cured. Only the symptoms can be managed. But I can think of tons of situations that are far worse than my own. I also know that I have been given the strength to handle this new situation. God won't leave me hanging. Plus, hopefully by the time I reach the senior citizen discount, there will be major medical advancements allowing me to regenerate/clean my immune system. Studies are currently in the works! 

Now for a little dose of good news. My healthy diet already supports immune health. Also, I have a big appointment on Tuesday at RedLine pharmacy to review the full hormone panel I went through a couple weeks ago. I have major expectations. I've heard wonderful success stories about regaining control of the crazy world of hormones and can only hope I have the same results. More about that later this week. 

So. With all of that being said. Who want's to switch immune systems???

Now, I'm off to sleep ;) 

(Not So) Sleeping Beauty

Hellooooo!

Since my last post in July, not much has changed. Which in some ways is good, but most ways it's been adding to my long list of frustrations. At my last big appointment in July, things cancer-wise were stable. No tumor markers were present in my blood work. The spots in my lungs were not scanned and I believe that's on the agenda for my appointment towards the end of this month. Let's just say if they aren't, soon after I talk with my doctor they will be. I requested all of my records in July and am not comfortable with "indescribable" as the word choice noting the spots. Hopefully we can pinpoint those a little better in the near future.

As for why I'm so frustrated:  I am still very fatigued, along with every other low-thyroid symptom under the sun. It's no surprise though that my doctor wants to sllllllllowly inch along and continually has me wait 6 more weeks to see if things change. (For the record, they haven't for the last 8 months!) On top of that, she advised me to see a sleep disorders specialist. I should've refused right then and there. But I consented and met with the very nice man at the med center in August. He completely agreed with me in that he thinks my problem lies with not enough supplementation of medication/thyroid related. However, he thought it would be best for me to go through with a full blown sleep study to prove it to my doctor. Which brings me to the title of this post.

When discussing what all a sleep study would entail, it didn't sound all that bad. 24 hours in the hospital. DVD player. A chance to catch up on some reading. No obligations. And best of all, lots of sleeping! Little did I know it would be absolutely nothing like I had imagined...

I checked-in Monday evening and immediately was uncomfortable. Yes, I had a private room like they promised, but cameras and an intercom were staged around the room, and right outside my door sat the desk with computers where the nurses kept a watchful eye on me. I was told they would "put me to bed" around 11pm but preparation would start at 10pm as it took 45 minutes to hook me up. Thankfully Monday Night Football was on to keep me occupied. When it was time to set everything up, I was in shock at what all they pulled out of the closet. They were not lying about the 45 minutes. In the end I had 10 electrodes glued to my head, 8 on my face, 4 on my chest monitoring my heart, 3 on each leg, a couple on my fingers, 1 band around my chest, and 1 band around my abdomen. Oh, and an oxygen tube in my nose circling my ears. Phew! I had the nurse take a picture of me, but absolutely will never ever show it to anyone. Unless you're willing to pay me. (I was no sleeping beauty.)

Then it was time for bed. Except I had no idea how I was supposed to sleep hooked into the wall and knowing I was being watched. That was probably the closest I'll ever come to being a fish in a bowl. Actually, more like a poor mouse being used for research. Once I was helped into bed, the nurse left and began to speak to me through the intercom. The wires needed to be calibrated. This was the process: stare at the ceiling, now close your eyes but don't fall asleep, look up towards the head board and down at your feet multiple times, look left and right multiple times, blink quickly 10 times, swallow, grind your teeth, and make a snoring noise. That alone was a task.

I honestly slept okay, until they woke me up at 6am. So much for the recommendation to get 9 hours of sleep each night. My breakfast came shortly after. I had to pre-order my meals the night before. At that time the food sounded pretty good. But when it arrived, I instantly lost my appetite. I attempted to eat some of it but couldn't do it. Then it was time for my nap study. At 8am, 10am, 12pm, 2pm, and 4pm they would be coming in to put me down for a nap. I knew there was no way I was going to be able to take that many naps in one day. But, again I was fooled. I didn't actually even get to take one nap the entire day! A little before each hour mark they came in and helped me back into bed (still all hooked up). Next we repeated the calibration process. Finally I was instructed to try and fall asleep and to resist the urge to stay awake. The first session I was still tired from a long, but fun, weekend in addition to an awkward night of sleep prior, so I think I did fall asleep. But, before I knew it my nurse came in and flipped on the lights! She said, "Keri, your nap is over. It's time to get out of bed." I checked my phone. It had only been 23 minutes! I was confused. At 10am, the exact same thing happened. Finally after the noon session (18 minutes this time) I asked if I was ever going to be able to take a real nap. I was quickly told, no. What a joke! I thought this was supposed to be a sleep study. My frustration was quickly growing, and I tried to keep my annoyed sense hidden but it was tough. I did apologize a couple times to the nurses stating that I just couldn't understand why I was having to go through all of this. I also asked if I was "failing". Her response was, "That's a really great question. But I'm not allowed to answer that. I have a very good idea though." Ughhhh. Get me out of here! Finally the entire evaluation was over. Praise the Lord! I was mentally and physically exhausted. And to top it off I felt sick. But I was done and ready to hit the road for home. And as my lovely souvenir, I had rashes on my face, neck, and chest from the lovely tape they used. Along with thick globs of glue in my hair. Again, no sleeping beauty.

Within the next week I will be hearing from my doctor about how it all went. In my mind, I am still certain that everything is thyroid related and I do not have a sleep disorder. And I cannot wait to thank my doctor for her "wonderful" suggestion. I think I'm going to have a hard time keeping the sarcasm out of my voice at my next appointment.

I slept for 13 hours straight last night. Obviously I know how to sleep just fine. So in the end, instead of it being a nice little getaway to lala land for 24 hours, it was an exhausting, stressful, and annoying evaluation. All I wanted was to be Sleeping Beauty, who in the morning would be awoken by a sweet kiss from Prince Charming himself.

I guess I'll keep dreaming...