Monday, March 31, 2014

Neuro and heart palpitations

I got MOST of everything situated. Got ahold of my neuro nurse and she called the Xy pharmacy. Apparently they sent it to the wrong fax number. They switched locations (just floors, same building) a bit ago and so they have new numbers. The nurse said she'd put the correct fax number on the papers so she doesn't know WHY they sent it to the wrong number but that's situated. Now I just have to wait on the verdict from my insurance.

I had a really bad day today. I've been having palpitations infrequently since the 18th. I had more severe ones today, and when I finally checked my heart rate after the worse was over and it was 50 BPM and slowly rising. I'm assuming when the worst of it was happening it was in the 40's. I thought about calling my EP but I feel silly. Plus the office is half an hour away and the kids are on spring break.

If it happens again before my appointment I'll definitely call. Anyway, I'm having trouble staying focused so, more later. <3

Thursday, March 27, 2014

Appointments and Decisions

So busy. I don't even know how to fit everything in my week when it exhausts me. My phone screen cracked (barely) and now my phone doesn't work at all, so I switched back to my older phone ALSO with a cracked screen that DOES work despite being further cracked than the other one. Stupid phones. I need to invest in the stocks for shock resistent cases and bullet proof screen protectors. I'm so clumsy sometimes. I've dropped numerous phones and either cracked the phone, the screen or wound up running over it when it bounces un-noticed under the car. I've also dropped just as many in water. Total clumsy when it comes to phones. More have died naturally, charge ports being messed up etc. I have the worst phone luck of all time.

On top of all that, I had all my appointments stored in the phone and for some reason the calendar didn't sync so I missed my ENT appointment this week. Just a follow up but still. Now I have 3 appointments the first week of April (though only one for me so far). SDiva has her yearly (along with DCourtley) and then the following day we have to take SDiva to a children's hospital 2.5 hours away because she needs to see a GI doctor and the (only) one closer to us doesn't accept our insurance. And open enrollment for switching isn't until May but won't take until July.

I have most of my appointments written down in my notebook but I'm sure I'll wind up forgetting something. It's just SO easy. Most of my doctors call a day or week (or anywhere in there) before the appointment to remind me so that isn't AS difficult, except last minute I wind up scrambling to get everything I need. But my ENT does NOT call. At all. Ever. I've missed two appointments because of forgetting what time/losing the appointment card. Which I understand is all on me, I'm a grown woman, I SHOULD, in theory, be able to keep track of this stuff but I'm usually so sleepy. And brain fog, I rely HEAVILY on my cell phone or other people to remind me things. And my cell phone broke and didn't back up when I switched like it SHOULD have done. I even tried to sync it manually multiple times. I don't know why it didn't work. Oh well. I guess I'll just have to start taking multiple precautions.

In further news, I called the pharmacy again about the Xy meds. My neuro called it in probably 3 weeks ago and I've only spoke to ONE of the people who was supposed to call me. I even called the second and left a voicemail but still never heard back so I called again this afternoon and was told that they were waiting for the preauthorization. Apparently they'd faxed it to my neuro to submit to my insurance and hadn't heard anything from anyone, neither my insurance or my doctor. I tried calling my doctor at 4:36 and they'd already closed with no option to leave a message unless you know the extention, which I don't. Which seems remarkably irresponsible. Most all doctors I know at least have a messaging system so that if a patient needs help after all but non-emergency they can leave a message that gets checked randomly or at least an answering service. I had this same problem before when I was having numbness and tingling in my hands/arms and face as a side effect to the Topamax. It was the weekend and I wasn't able to get ahold of them and by the time I could, it'd stopped.

I'm debating on calling my Electrophysiologist. I've had a few episodes of heart palpitations on the 18th, 19th and 21st and minor ones infrequently over this week. And also, my calcium channel blocker pretty much does nothing for me. I really wish I were back on beta blockers or something. I can't get allergy shots on the beta but the CCB just does NOT seem to work, at all, even with the increase. I don't know what else to do. The blood pressure meds seem to be holding steady for now so at least there is that. But I just don't know. I can't stand my heart racing like that for the littlest things. I can't even carry JSmiley up the steps without it seriously taxing me. I need Big Daddy to do so much because I just can't. It's so hard. But what can you do?

I still don't know if I want to go to Vandy or not. I haven't decided but I don't know. I want to feel somewhat better even if there isn't a cure and I'd like to know ALL my diagnoses, I'm just that type of person. I want to KNOW everything about me. I don't really know where it comes from, there's probably some psychological explaination but I'm not sure I'd want to hear it. I want to know every single detail about my health (which is partly why I put up with the doctors for 13 years and didn't give up, even now I'm still seeking answers) and I want to know about my family history. I love geneology and I want to do one of those tests that tell you your heritage percentages. Everyone here thinks it's pointless but I feel the NEED to now. Just like with POTS, Dr. M feels as if I DO have POTS but will not officially label me unless Vandy does. That "I honestly believe it's POTS instead of IST, but..." just isn't good enough. I mean, it kind of is but not over all. I sound kind of weird saying my doctor says I most likely have POTS but it isn't official. That irritates me. Just like when I wouldn't let the cardiologist leave it alone at "SOMETHING is wrong but we can't treat it unless we know what it is, so there's nothing we can do." I pushed for more testing then. But I just can't make that YES I want to go or NO I'm ok with not going. I don't like being poked and prodded, I am EXTREMELY wary of other doctors (even my own sometimes). I'm afraid of what answers I will or won't get. But yet, I still have that nagging in my head that I WANT to know. How am I afraid of the journey but still feel the overwhelming sense of NEED to know.

Plus I can't go on my own, not only would the testing likely DRAIN my but I can't drive that far on my own. My current doctor visits kind of drain me. I believe my max is probably about an hour and a half round trip plus testing/waiting/appointment and I start getting really symptomatic. Big Daddy is going with us to the GI because I'm almost certain I can't make the drive by myself. I'm not even sure I'll come out unscathed withOUT driving the whole way (or even at all) since I need to recline and rest after being up for a long period. I might be able to make it there and through the appointment, but the drive home will likely be a bit much. But that's all just a guess since I haven't gone that far in a long time. But I DO know I start feeling drained after some of my more local appointments and they're much closer than the GI or Vandy. I really just don't know. My next appointment isn't until May but I could always call before then, or just to report some of the things I've felt lately but I don't know if I'll be able to make that decision. I guess only time will tell. If I can avoid the anxiety of course. Anyway, it's dinner time and I'm starved. More later!

Friday, March 14, 2014

Lookie What I Got!

I'm REALLY happy with this company. I was impatient as usual but I'm already the proud owner of thigh high compression stockings. Now I want more. I almost missed it, I'd been refreshing the tracking app since I woke up (both times). Luckily I heard my screen door shut since I can't hear knocks upstairs unless it's really loud or other circumstances. I ran downstairs thinking they'd left the package but instead there was a delivery attempt note. There was no way I could go pick it up or wait for re-delivery on Monday. But I heard the truck start up so I grabbed the note off the door and ran toward the street. Luckily he saw me running with the paper and assumed I was his delivery and backed back up and gave me my package.
They fit wonderfully! Yes, I immediately put them on. I suppose the compression will take some getting used to, I'm glad I got 15-20 to start, to get used to it. I'm thrilled with the company (or companies). Despite my impatience it was very fast! The order was placed at the end of business and I had tracking in my email inbox by end of business the next day. AND even though I paid for standard shipping, I got it before end of business the next day. I suppose it'd be because I'm close to the company that makes the one I bought but still. I expected to wait up to a week or so. So far I'm super thrilled with everything. I'll definitely be purchasing from there again.
In fact, hopefully I'll be purchasing again SOON. Big Daddy likes them too especially since they appear to work. I may eventually go up a strength since I can feel where it wants to tingle but the stockings are working at this strength so maybe when it's time to replace, after I'm fully used to these. There aren't many color options on this site for 20-30 though. Still. I'm loving the 15-20 options. 20-30 pretty much has ebony and natural. 15-20 has sandstone, ebony, wheat, natural, mocha, smoke,navy, etc. Wheat might be too white for me, sandstone matches my summer color and isn't too far off of my winter color. The other's I'd get to match clothes. We'll see.
Edit: 20-30 does actually have more color.  For double the price. :/ 

Wednesday, March 12, 2014

Compression and Narcolepsy

Compression stockings.

I've noticed for years now that my legs and hands "fall asleep" very easy. Like, if I sit with my legs in any position but out, a good portion will be affected. My arms, can't be up, can't have much pressure, or they too will go numb. Case in point, my head is on my hand, arm at an angle like kids lay to read or do homework, already tingly. I've noticed several spoonies mention compression hose, I asked my neuro but she was clueless as to strength (15-20, 20-30, etc) and mainly knew about the TED hose so she told me to ask my EP. I left a message for the nurse but they never called back.
I just noticed this entry was... fractured. I skipped straight from seeking medical advice to refreshing my order screen. Brain fog I presume. Anyway, I went to one of the sites another Dys blogger recommend and ordered a pair of close toed thigh highs. I'll reevaluate strength and such when I see my EP again since the nurse didn't call back.
I've refreshed my order screen a million times. It still says pending. I didn't exactly get fast shipping but I'm impatient. I'll check it probably several times a day until it gets here. Patience is not a virtue I posses.
In other news, the central pharmacy called, apparently I'll receive a few calls from them, the one I got yesterday, the one I should get no later than tomorrow from admissions about insurance or paying, from their pharmacy staff to discuss meds I'm on etc, and nursing staff, I think I'll get my own helper nurse or something. And there's also a patient mentoring thing. I don't know. She said they got the rx request the day before the call and the call was yesterday and that admissions usually calls in 1-2 days. I didn't realize I'd be talking to so many people or that it would take a while. Again. Patience has never been my strong suit.

Sunday, March 9, 2014

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.

Wednesday, March 5, 2014

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.***