Little Things In Life

Sometimes I struggle with being sick and not having the full support of those around me because they don't fully understand. Sometimes they get frustrated because of that. But sometimes someone special will do something special and it really touches me that they tried. It's the little things you know?

Wednesday I text Big Daddy at work to let him know Saturday was Narcolepsy Awareness Day. He immediately text back "K, what do I wear?" He wanted the awareness color. That night when he got home from work he marked it on his calendar, so he wouldn't forget. And Saturday, even though he worked and had to be in work uniform, he wore a black shirt underneath which he kept on when he got home and went back out. All without prompting. Little details like that make it better. But the best thing was the email. I emailed him a copy of my blog post and a few minutes later he text me asking if I'd liked his email. This is what I found:

 

"U may have narcolepsy but the truth is I wouldn't trade u for the healthiest person in the world. Glad to be with u babe love u and I will see u when I get home. XOXO"

 

We struggle with me being sick and it does cause problems, for both of us but it makes me so happy when things like this happen.

 

He also had to do recertification for work, one being CPR, and he knew answers no one else in his group did, because of me. Like he knew all about how to give an epipen injection, right down to rubbing the injection site after, how to use an AED, what to do or how to handle when someone's stats are crashing and/or sugar crashing. I tell him all of this as I get it or how to help next time and I never realized just HOW much he was paying attention. And that matters to me.

Suddenly Sleepy Saturday: National Narcolepsy Awareness Day

 

Today is Suddenly Sleepy Saturday, also known as National Narcolepsy Awareness Day, a part of National Sleep Awareness Week. Do you know someone who suffers from Narcolepsy? I bet you do. Perhaps even YOU do but just don't realize it yet.

 

It is estimated that Narcolepsy affects as many as 200,000 Americans (or 1 out of every 2,000), although fewer than 50,000 are diagnosed. There is strong evidence that it may run in families; about 8 to 12 percent of people with Narcolepsy have a close relative with the disease. Although it is as widespread as Parkinson's disease or Multiple Sclerosis (MS) and more common than Cystic Fibrosis, (though not as well known), it is often mistaken for depression, epilepsy, or the side effects of medications.

This disease is a sleep disorder, involving irregular patterns in Rapid Eye Movement (REM) sleep and significant disruptions of the normal sleep/wake cycle. While the cause of Narcolepsy is not completely understood, current research points to a combination of genetic and environmental factors that influence the immune system.

 

Symptoms of Narcolepsy may include:
1. Excessive Daytime Sleepiness (EDS), an overwhelming sense of tiredness and fatigue throughout the day.
2. Poor quality of sleep because the sleep wake patterns are disrupted.
3. Micro-naps (falling asleep for a few seconds) and sleep attacks (an overwhelming urge to sleep).
4. Abnormal REM sleep, detectable only by sleep lab tests, such as a Polysomnogram and/or a Multiple Sleep Latency Test.
5. REM intrusion into daytime wakefulness.
6. Cataplexy, events during which a person has no reflex or voluntary muscle control. For example knees buckle and even give way when experiencing a strong emotion – laughter, joy, surprise, anger – or head drops or jaw goes slack from the same kind of stimuli. This is what the media portrays as Narcolepsy, though they largely get this wrong too. For instance, the character with Narcolepsy falls asleep in his bowl of soup at the dinner table. As stated, Cataplexy is an involuntary loss of reflex or muscle control. Sufferers are still fully conscious.
7. Hypnogogic and/or Hypnopompic hallucinations, events of vivid audio and visual events that a person with Narcolepsy experiences while falling asleep, or while awakening.
8. Sleep paralysis, a limpness in the body associated with REM sleep resulting in temporary paralysis when the individual is falling asleep, or awakening. Also sometimes referred to as "Old Hag Syndrome" due to the frightening sounds or visuals (#7) and the feeling as if someone were sitting on their chest, pinning then down.

- Only 20 to 25% of people with narcolepsy have all four symptoms
(excessive daytime sleepiness, sudden loss of muscle function, sleep paralysis, hallucinations).

 

Narcolepsy is diagnosed through a sleep study, a set of medical tests including an overnight Polysomnogram (PSG) and a Multiple Sleep Latency Test (MSLT), an all day test lasting roughly 10 hours and including 5 short naps in 2 hour intervals. Even when clear-cut cataplexy is present a sleep study is necessary to rule out sleep apnea and other possible sleep disorders contributing to EDS.

 

***Disclaimer: The content above is not solely my own. Stats and other info was comprised over various sites, compiled together and later edited, embellished or further noted upon by myself.***

 

POTS Symptoms

This is the only list I've found on POTS symptoms (in list form) and it said incomplete but you know. It's something.

 

☑ Lightheadedness
☑ Fainting or near fainting
☑ Visual blurring or tunnel vision
☑ Palpitations
❓✴ Tremulousness (shakiness) and weakness, especially of the legs
☑ Fatigue
☑ Exercise intolerance
❓✴✴ Hyperventilation
☑ Neck pain, also called “coat hangar pain”
☑ Shortness of breath
☑ Anxiety and panic feelings
☑ Chest pain
☑ Nausea and other stomach and digestions symptoms
❓ ✴✴✴ Acral coldness or pain (meaning in the extremities)
☑ Concentration difficulties (brain fog)
☑ Headaches and migraines
☑ Sweating problems, either too much or too little
☑ Increased heart rate while laying down
❌ Foot swelling and obvious blood pooling in the legs
❓✴✴✴✴ An increase in adrenalin levels in the blood (called norepinephrine and catecholamines)

 

✴Only when I'm pre-syncope
✴✴Not normally but anxiety causes it so I can't say yes or no.
✴✴✴No clue what that is. My feet hands get numb cold and tingly but I don't know if that's the same.
❌ Not as far as I'm aware
✴✴✴✴No clue

So a whole lot of ☑, 4✴ (maybe or I'm not sure, need further clarification, or explainable by other symptoms/not frequent), and one lonely not that I'm aware of/no.

To Vanderbilt or Not To Vanderbilt

That is the question.

 

I saw my Electrophysiologist last week. It'd been 6 months since my last appointment. Probably more since they rescheduled it. Probably closer to 7 months. We talked about the weight loss I'd had and how even the diet change, while I felt better, I didn't FEEL better. We also talked about how the calcium channel blocker wasn't NEARLY as effective as the beta blocker I'd originally been on. He mentioned that it was common and upped the dose plus put me on Florinef. Well, generic.

 

Then I asked the question I'd been meaning to ask at nearly every appointment but wind up not for some reason. At a few appointments he'd mentioned POTS in passing and I'd wondered since the beginning if I had it too. He said he'd always leaned more towards POTS for me but to say definitely that I did, I'd have to undergo more testing, something about sweat test and possibly more. I always thought a tilt test could tell both but I don't know, maybe the NCS got in the way? He also said that testing is done at big hospital/universities, the closest being Vanderbilt. He said while it's his opinion that I do indeed have POTS, he hasn't sent me yet because the treatments are the same/similar but he'd refer me out if I wanted.

 

I don't want to change doctors or have to go to Vanderbilt for all appointments and I'm not sure if it'd change anything but I WOULD like a definite "Yes, you do." Or "No, you do not." I don't know what I'll decide. He said we could discuss it again at my next appointment in 3 months (not 6, since I'm not doing as well as we'd like) or if I felt the need, I could call any time but the wait is 6-12 months.

 

We shall see.

Merry (Belated) Christmas

Technically Christmas is over here, it's the 26th now. It was fairly decent. The girls got a lot more than I expected, Big Daddy's twin sister, Aunt J got them a TON of stuff including an android tablet and a kids digi cam for the older two and a bunch of little stuff, and a few toys for JSmiley. We got the big girls each a handheld game system. J got a million and one baby dolls. Barbies are every where. Clothes, shoes and toys from Nana. Barbies and babies from Granny and Uncle H/Aunt B (and so many more!)
 

The girls went to Christmas breakfast and lunch with Nana, who was visiting friends and relatives then we (all) went to late lunch/dinner at MIL's. I cheated a smidge on my diet but one day won't hurt much. In fact, I think a cheat day every so often (unless it includes a food that's dangerous, none of my cheats are anaphylaxis inducing) helps keep you focused. I did very well with zero subs or cheats for 3 weeks but then I was going nuts with cravings. That one cheat settled it down (and even reaffirmed why I was doing the diet) and I was happy as a clam.

But I need to get back on the roller coaster now that my holiday cheat day is over. I'm down to 150/151 and I'd like to keep losing just a little. I'd also like to tone/shape but it's so exhausting. An exercise that says it only takes 20 minutes ALWAYS takes me an hour and I'm exhausted forever. Of course that was 34 pounds ago. Maybe it'll get easier?

Anyway, just wanted to wish the blog sphere, especially all the spoonies a belated Merry Christmas (happy holidays). I'm including one of the blooper pictures taken at MILs, watermarked but mostly unedited. I don't like posting pictures publicly of the kids (really anyone/thing) as people can be horrible and steal them to use for ill/trolling but it just doesn't go over as well distorting a Christmas card(ish).

JSmiley wouldn't quit petting her sisters, I was trying to get her to quit/focus on Granny, daddy was watching both of us and DCourtly blinked. Never a dull moment trying to take a decent picture.
 

Positive Reactions To An Allergy Free Diet

It really is hard to juggle illnesses sometimes. I'm laying here, awake, at 1 AM scouring Paleo/allergen blogs for new recipes. It's so difficult to juggle multiple allergies. It's rare that I find a recipe that doesn't include any of my allergies that I'll eat. And when I do, it usually includes some kitchen appliance I don't have. Let's face it, having an autonomic disorder, I've never been one to spend hours in the kitchen. If Big Daddy cooked it was fast, if I cooked it was something I could throw together in minutes and go rest between checking or even microwave processed crap food or even take out. I don't have that luxury any more.

 

Granted I won't complain TOO much. The food is excellent and I've lost almost 30 pounds but it's exhausting. Sure I can rest while it's cooking but eating this way usually involves prep. I was cooking the other day and got severely dizzy after putting chicken in the oven. I'd used all my pre-made (by me, not store bought) sauce/glaze/whatever and I have to brush the chicken again halfway through cooking so I started making more. I didn't get more than the wet ingredients into the bowl and mixed before I had to throw it in the fridge and go lay down. Checked my blood pressure and it was low even AFTER the severe pre-syncope passed. Top was low 80's bottom was high 50's/low 60's (57 - 61). Yes, AFTER the vertigo passed. Then, when it was all said and done, I went to remove the chicken from the oven and burnt my wrist on the shelf. It didn't blister and Big Daddy bandaged me up with some gauze and burn cream but over 2 weeks later it still feels really dry and slightly discolored. It's fading though.

 

I've taken to doing the extensive prep work sitting down in a room other than my kitchen. If I'm feeling poorly, Big Daddy will even bring the ingredients to me. He's even done part himself quite a few times. But, he doesn't like cooking, doesn't think himself capable. He makes a mean breakfast sandwich, like to die for. But he's very much dependent on the simple way, boxed, pre-packaged. None of which I can eat. I can't even eat that scrumptious sandwich any more unless I'm prepared to face the upset.

 

I've found a few recipes that are delicious and allergen free (free of mine, anyway) but who wants to eat the same handful of recipes over and over again. They're good (delicious is too mild a word) but I need variety. I do fairly well avoiding soy (except ALL the vegan/dairy free substitutions I've read about, like the vegan butter, veganaise (vegan mayo) etc, at least the ones HERE, all contain soy). So I found recipes for dairy free, egg free, soy free butter, mayo, ranch, ceasar dressing, etc. Talk about awesome! Yea, not so much. I mean, the recipes claim it's as good as store bought allergen versions but they all need kitchen appliances I don't have, so for now I'll just have to wait.

 

I had to go re-read what I wrote last time to see how much I needed to update. I officially tested egg white, I'm allergic, officially tested dairy (cheese) and am allergic. Cheese is the cause of my acid reflux. When I'm off dairy I can even stop the prilosec. Mostly anyway. I had a few infrequent flares over the last two months but over all, if I avoid dairy I don't need it! Tomato I kind of cheated the test. I don't like tomatoes except mixed in with my taco soup recipe and since I'm off dairy, I can't eat that. So I've been sampling condiments containing tomato/tomato paste. Like ketchup, barbecue sauce, steak sauce, etc. By far it's the least reactive to date. I have a very minor reaction, I can barely tell. I still react but minor, I can ignore it mostly. But it kind of feels wrong. I got tired of mustard being the only condiment I could consume and I NEED (ok, seriously want) extras. I've always been the type to need sauce, gravy, condiments, the extras you know. In a way, I feel that since avoiding allergens helped me lose a bunch of weight that otherwise WOULD. NOT. come off, and how much better I feel (stomach and GERD wise at least), that I should avoid all the ones I react to. But on the other hand, it's a mild reaction and I'm going stir crazy without tomato based foods/extras. 

 

I gave in and ate pizza. Of course it gave me heartburn, my stomach felt angry and I feel as though I need to down a bunch of fiber. I had a really REALLY bad craving for pizza and chinese food for DAYS and didn't feel up to cooking for myself so I gave in and ate some. It was delicious but I felt like crud. I need some easy recipes that don't take a kitchen full of fancy appliances, 30+ minutes of prep and an hour or more to cook. Even the soup recipes take a long time or require multiple steps or leftovers (that took equally a long time to cook). I miss just being able to throw something on the stove or in the microwave and from start to finish be done in 30 minutes. But I like not feeling like crap. I need a new kitchen and a lifted bar stool/lounger or something. But who has that kind of money on one income. One day though.

 

In the meantime I guess I'll make do with what I have, what I can find, and try to incorporate previously untried foods. And hope I don't react.

 

Furthering on that, my dys is unaffected by my new diet. At all. My heart rate is still as wild and the dizziness too. I believe the severe near syncope episode from the other day had to do with switching from a beta blocker to a calcium channel blocker (so my allergist would take a more hands on approach to me). I quit taking it and my topamax. No frequent migraines (I can count the number I've had)! No GERD! Lots of weight loss! Obviously this diet is right for me. But my dys is still acting up. I'm going to try the CCB again now that the topamax is out of my system (both claim to lower blood pressure, the T alone never affected me, so I'm going to see how I do on JUST the CCB. Ok I've rambled enough. More later.

 

The picture is of my burn immediately after it happened.

 

I wonder what the etiquette is on posting recipes I've found online. Just link the original, post the recipe AND link the original, or what. I don't know, I'll figure something out. I have them all written down but I don't want to step on toes.
 

Allergies

*Peaks head out from behind curtain* I know, I know. I'm a sucky bloggist. It is what it is. I hate trickling information but it probably would've been more informative to keep up as it went along.
Nothing much ever came of either scan. I have no clue what the bone narrowing was or wasn't as the bone scan was clear. It was a very cool test, but clear nonetheless.

The sinus cyst appeared to just be mucus (gag) deep in my head and she said the symptoms I felt weren't from it but from allergies and sent me for the injection test. I believe I was stuck in the arm 51 times, with 19 allergens and reacted positively (allergic) to 16 of them.

Furthering that, the office where they did it tells you to avoid antihistamines the week before but also beta blockers (mine) and additionally, milk and some others. I had to reschedule because I got a sinus cold and took meds that I couldn't (on the list) after being off milk/dairy a few days then going back on it, and had a reaction. Then after I completed the test (going off dairy again) and eating dairy again, I had another reaction. Adding that, plus the arm results, and the way I react to pumpkin, she sent me for a RAST test (blood allergy). The results were 3 pages long.

The summary, I'm borderline allergic/sensitive to egg white, milk, cod, wheat, peanut, soybean, corn, orange, chicken, apple, scallops, clam, oyster. Actually full on allergic (low level) to tomato, crab, crayfish. Moderately allergic to shrimp, tuna, and lobster. I have other low to "very high" environmental allergies (detailed in the skin test PLUS the ones that were negative on the skin test, were positive/borderline on the blood test). I left her office with a prescription to an epi pen.
At first she wanted to do allergy shots but changed her mind when I reminded her I'm on beta blockers (since they specifically said not to take them for the test because the meds they give for an allergic reaction won't work). She's afraid the shots would give me an anaphylactic reaction and the beta blocker would hinder treatment. Nice huh. So shall I AGAIN repeat what I say every few months about one treatment of mine canceling out another?

Now most people may wonder how I didn't know about the moderate seafood allergies, those at least are more bothersome (especially if "borderline" milk makes me react after not eating it for a few days) and the answer is simple. I don't and never have eaten shell fish. Ever. But my goal recently was to get over my picky ways and eat more foods, had actively, if slowly started, with success, started trying and liking new foods I'd never tried. So eventually I'd have probably tried it.

Right now I'm midway through week 3 of a modified elimination diet. I haven't had dairy, egg, soy, wheat, tomato, seafood (tuna or any other non shellfish I've ever tried), SODA (I've had 5 sips/swallows, literally) in almost 3 weeks. Today is day 19, and as an fu to the NP who told me to simply cut soda, my heart still races and skips beats, yes no soda is much healthier, but it did NOTHING for my heart rate. I had an oops where I was exposed to cheese on Wednesday though. I went somewhere with Mom and they had breakfast foods and I stuck mainly with the meat but mom and her boyfriend said to just pick the cheese off the potatoes as there wasn't much so I did thinking it'd be ok. Wrong! I only ate a few pieces and within a few minutes felt awful (and for the rest of the night). So contaminated food, made with dairy, even if you remove the cheese STILL COUNTS NEWBIES. Lesson learned. "Luckily" dairy intolerance is just GI for me and not anaphylactic. Around the beginning of November, after a month of no everything listed, I start slowly reintroducing to see how I react. I'm still going to officially test dairy. I noted my oops but I'm going to still officially test it.

This was REALLY itchy.