Saturday, December 27, 2014

Not Content

Pretty sure I'm going to ask/beg/demand for more. I've got half a million doctors appointments next year and not knowing is driving me batty. I want more testing. I want more of my issues to have an answer/diagnosis. I want ALL the testing but I have no clue where to begin. I know I can add Restless Leg Syndrome (last night was BAD), but what about the rest. There are SO many that go hand in hand with POTS/NCS/Dysautonomia that I'm either symptomatic for or just plain don't know anything about. I need to research.

Last night was so bad. Coming back from the mountain on Christmas irritated my legs and last night I just couldn't deal. I couldn't find any relief. No matter where I moved my legs. On top of that, my right arm is having more numbness and tingling issues (worse than the other limbs). I'm so over all of this. I feel like I need to sleep for a week to let my body heal. I've definitely been doing WAY too much this winter.

Tis The Season

Of course I'm behind the camera this year. Happy Holidays/Merry Christmas!

More From J

Christmas is over finally over. JSmiley is doing a little better. Still coughing. Not sure how much better. She had her follow up on Tuesday, apparently by then she had a double ear infection. The ER peds doc initially missed it, the doc on peds spotted it and the ER peds doc came up and agreed. By Tuesday,her ped looked and said there was infection in both ears but no redness/inflammation. She still had a wheeze and tightness on Tuesday. We were home by 5 on Sunday with oral antibiotics, oral steroids and a box of albuterol and nebulizer.

Tuesday he said since this is the 2nd time she's needed breathing treatments (she had bronchitis that wouldn't go away when she was 1 and needed treatments since her O2 sats dropped into the high 80s then too) that they usually diagnose asthma after 3 attacks so one more. He said it most likely is asthma though. Right now they're still calling it reactive airway. It generally only happens so far when she's really sick but may have to do treatments before major activity. She didn't get any refills on the albuterol but is on a 10 day course of antibiotics with a second 10 day course waiting at the pharmacy in case the first isn't enough. Plus she has 2x/day inhaled steroids. Kind of like an asthma inhaler, only for the nebulizer. She has a 6 month supply but it's confusing me. The doc said "Indefinitely, until she's better." Which is it? If she's better by new years, discontinue? Keep going through winter? Keep going indefinitely, at least for a few years? She's already annoyed with it, even though she does so well. I'm assuming when she's old enough, if needed, it'll go from the nebulizer to an actual inhaler. Right now she doesn't really get some "inhale and hold" instructions. And if she does, getting her to follow bodily instructions when she doesn't want to is pointless. The nebulizer is much more effective at the moment.

I'll probably take her in for a recheck in a week to see if the tightness is resolved and the infection is gone. Especially if that cough isn't resolved. Anyway. I made a collage of pics from all of this since I can't effectively post multiple.

Top Row:
1. J's stats after the first breathing treatment. Her hr wasn't affected by it, it was up from respiratory distress (it was 140 here but was higher periodically). One dose of albuterol and only 92.
2. She doesn't LOOK all that bad here. She's had most of her tests, IV, blood work, etc. This is either right before or right after xray.
3. All tests done, one breathing treatment, waiting on test results. She looked so peaceful. However, she curls her fingers in sleep so her pulseox kept losing the feed and alarming. I barely got to sit down.
Middle Row:
1. Despite a breathing treatment, her oxygen starts dropping again so they give her some oxygen to help. She HATES the cannula. HATES. I had to hold it out of her nose so it blew in but the tube wasn't in. At one point I even taped it to her pacy. Which yes, she's 3. But it was a comfort for her while being used as a pincushion.
2. Exhausted after a long (half) day in the ER, finally in Pediatrics.
3. Feeling much better the next day.
Bottom Row:
1. Playing toys between breathing treatments.
2. Someone gets to go home!
3. A pro at breathing treatments

Saturday, December 20, 2014

It sucks when it's your child who is sick.

I still need that vacation. I've been at the ER since 7 AM. Not for me, for JSmiley. Yesterday or the day before she started out with a mild cough, that irritated her throat (I'm not sure if you could classify it as a legitimate sore throat as it only bothered her when she coughed). Last night she seemed to be a little off with her breathing but settled down and wasn't acting weird,  just coughing and such. Still jumping, running, playing. You know, normal hyper 3 year old behavior. Woke up around 4:30 and she was burning up and visibly breathing weird. Likeshe had to work for it. Gave her meds (for the fever) and took a bath and got dressed. She still seemed MOSTLY fine, though a bit clingy. She asked for juice and was watching a cartoon with Big Daddy but I just didn't feel right not addressing her breathing so I drove her to the ER sans bath.

In triage, they had trouble getting her vitals (except temp, it was down again) so they paged respiratory therapy and the doctor. RT gave her a breathing treatment first,  I think before the doctor even made it in. Her sats pre-neb were 90-92 sometimes dipping into the mid/high 80s. During the neb, they rose briefly to 97 but as soon as the albuteral was done,  it dropped to 94. She was also breathing hard/fast. About 40 respirations. Still sounded bad and sats wouldn't rise. They gave her an IV,  drew 3 vials of blood (no sign of infections), 2 throat swabs (RSV and Flu - both negative) and 2 xrays ("clear" - no visible pneumonia). Less than 3 hours later it was dropping repeatedly to 86-88 so they tried oxygen (hint, 3 year old don't like nasal cannulas, you have to get creative). All of the test results were fine but clearly something is wrong. They decided to admit her and added a "continuous breathing treatment " for an hour. That plus oxygen brought it up but as soon as the breathing treatment stopped and the oxygen was moved, dropped. They considered transferring her to a bigger hospital 30ish minutes away but with the minimal improvement they said they'd keep her. They gave her steroids and plus the oxygen, for a while it stayed pretty consistent in the 97-98 range.

She got saline, rocephin and potassium (with dextrose and saline) plus 2 more breathing treatments. She sounds a million times better, though I can still hear her wheezing from halfway across the room and her sats are still in the low 90s. As long as it's above 90 they say they won't give her more oxygen though which is bs. A friend of mine is an RT in NY and she's pretty outraged but apparently the staff here keep brushing it off. I will definitely be having more words with some doctors tomorrow. The nurses are just following orders. Though I'm not thrilled with the little bit of info they are forthcoming with. Just like I don't believe this is asthma, which they keep insisting, despite following it up with "but they can't/won't diagnose before 5". I just wish I knew what was wrong and how to help. She clearly doesn't feel well. Cough, sore throat, ear infection, plus whatever is messing with her lungs/breathing.

She's been such a trooper, even with the IV.  The pulseox annoys her so she keeps messing with it but the only thing she really flipped out on was the nasal cannula. She did not want that ANYWHERE near her nose/face. Anyway, its almost time for round 5 with the albuteral so, more later. I have WIFI here so I can post all day long (as long as my tablet is charged). Hopefully tomorrow brings health and clarity.

I'd post pics but they're all on my cell phone so maybe tomorrow. She's such a fighter but it's all so cute and pitiful. I just want to snuggle and love on her. She's so touched out though. Anyway. Adios.

Food Allergies Suck

Apparently I need to further restrict my diet. Not necessarily to lose weight but because I legitimately NEED to. Big Daddy made me an omelet for dinner two nights in a row (at my request). Dairy free though I'm sure cheese and sour cream would have made it delicious. Obviously I'm still missing most dairy. I realize that I am better off without it and dairy free substitutions are generally just as good (add a splash of lemon juice to df cream cheese, my mini blueberry bagels with "cream cheese" - rare - tastes just like the dairy version, and almond milk is yum). But anyway. Yesterday, I had GU issues but mild and brushed it off. Today. O. M. G. WHY on top of everything else.

In which, I need a vacation.

Looks like I'm just going to accumulate blog posts since WiFi isn't working.  I'll just mass post later. Today was a meh day. Big Daddy's mother is in ICU with pneumonia and infection in her blood. It's awful seeing her struggle like that. On top of that it's just been an over all stressful week. Well,  really it's been a stressful month/few months. I need a vacation or something. I can see why some people legitimately NEED drugs. I swear, if I drank, I'd probably be drunk. Or medicated but getting needed medications is pretty much like pulling teeth. I don't even try. I probably need to get back into therapy but that will probably be in the new year.

My insurance finally got reinstated (accidentally missed some paperwork when the whole family had bronchitis and when I called them they said it was all up to date, yea, no. I sent the paperwork in November and it just got reinstated today or yesterday so I had a bunch of appointments to schedule that I'd had to cancel (see previous post, 3 were scheduled, 2 I had to schedule and I have to make dental appointments for all 3 kids. I'm probably forgetting something. Ugh.

Speaking of appointments, I probably need to find my wallet. I only carry it when I have appointments so it kind of gets lost between them. Which is probably not the smartest thing to do considering it's got all our insurance cards, our social security cards and my ID/drivers license plus my birth certificate. Oops. Oh well, it's in here somewhere.

I don't think I mentioned it but I finally got my wisdom teeth removed! All four plus the molar the dentist (not the same one) left a cavity in. I was in so much pain last year and again this year. This year however the bottom right wisdom tooth (the impacted one that did the most damage) got accessed twice. Of course my insurance only covers emergency dental which yay it was covered. I'm so glad they are gone. SO glad. So now my migraines are simply migraines, not a result of my teeth. JSmiley needs some dental work and SDiva does as well. They've been talking braces for months (probably over a year). Even more so now because of the fall she had this summer.

I'm so exhausted though. I've been up and a bit more active. Just a bit, but it's still exhausting. The thought of all those appointments back to back is daunting. Appointments drain me. I don't know. I just feel so blah. I'll be back later.

I Guess I Really Needed To Get That Out

I know it's been a while but I'm still having problems with my cell phone, and it will probably be February or March before I get a knew one considering we are a one income family. My phone drains if I'm on it at all, even when I'm not on there much. It's a poor excuse but I get so little time on it then have to charge it for 4ish hours before I get to use it again. Right now I'm on my tablet but connection is shaky at best. I'm attempting anyway.

I hope that I'll be able to post but so far it isn't even letting me download the blogger app. Hmph. Anyway,  not much has happened in the last little bit.  I finally got both my paperwork and appointments for Vanderbilt. I am a bit apprehensive to say the least. I always get anxious about doctors, especially new ones.  I've had such a long journey just to get the first diagnosis and had to pretty much fight for each of them,  tooth and nail. It took 13 years and multiple doctors just to get the NCS diagnosis. I mean really. 3 states (I live on the border so I see doctors in 2 states plus I lived in South Carolina the first 5 years of that 13), 2 Emergency Rooms/hospitals in 2 of those states,  2 pediatricians (since it started at age 10), one family practice doc, one FNP, 3 pregnancies with 4 OB/GYNs (plus the last ones partners since you had to see them all AND their NP) and TWO CARDIOLOGISTS. You know the only people who gave a damn/acted like it was actually something, instead of brushing it off was 2 of the many OBs I saw. The 3rd and 4th. My last 2 pregnancies. THEY sent me for testing. They referred me to cardiology. But it wasn't until after my last pregnancy, when I had to literally argue with my cardiologist that it wasn't pregnancy related, wasn't anxiety, wasn't nothing. It was something and needed treatment. But all the doctors but those 2 OBs just brushed it off. I'm literally afraid of going to the doctor most days. Before most appointments, I get so anxious that they are going to dismiss me, or tell me that I am not sick/don't have xyz. Even the two doctors I see now, they KNOW I have a LOT going on and know that there is more they haven't found. I'll give my EP props, he's at least sending me to Vanderbilt. But I just feel like they aren't in any hurry to investigate further themselves. And I'm afraid I will get the same at Vanderbilt. I'm hoping for a positive visit but I'm also afraid.

I've forgotten when my appointments are but I think it's mid-late April. I'll have to dig out the paperwork. I just hope it shows stuff. I'm always afraid they won't find anything. Or they'll brush off test results. I mean, my cardiologist thought all my testing, the echo,  the stress test, etc,  that they were bad/abnormal for stupid reasons instead of an actual medical problem. My neuro thought I couldn't possibly have narcolepsy even with the test results showing classic positive. I'm so bitter because of all of this. The doctors who didn't believe me,  the ones who were downright hateful, the ones who tried to come up with alternative explanations. I admit it.  I am bitter. And it sucks. I wish it were easy. I wish I could just,  like,  give one vial of blood and have some computer analyze it and tell me what all is wrong. Man,  I wish it was that simple.

I don't even really mind the testing. Most of it is fascinating (if sometimes a bit painful). I mean, the tilt test sucked but was still interesting. Echoes and other tests like that were interesting. Seeing your heart on a screen is just as interesting as seeing a baby via ultrasound. Watching heart rhythms. Ok, so the testing for neuropathy sucked. But it was cool. In theory. I'm no sadist. Getting shocked repeatedly in my arm and leg hurt. The double biopsies above my ankles... Still got the scars. But the instruments and procedures as a whole are cool. Sleep studies, I mean, studying brain waves and stuff. It's fascinating. I just don't like when Murphy's Law rears up and bites me. I *know* I'm sick. I just hope the testing shows.

I have 3 appointments in January, ENT, Neuro, and Gynecology. One in February, Electrophysiology. Then Vanderbilt in April. I want to ask for more testing here,  like something Vanderbilt may not do. I don't know what though. I just feel like nothing has been done for a while. I want testing for the disorders that others with Dysautonomia have,  like Sjergens, or MCAD/MCAS/etc, or EDS,  or well, you get the picture. I want a non doubting doctor to review the tests I've had in the past and tell me, now that they KNOW something is up, we're those tests really "fine" or did they just say it was because they used an alternate explanation, like my cardiologist did on all the tests before the tilt. I already know he brushed off two tests,  possibly more. So what did they REALLY mean. I need to get copies of all my records to have on hand but with that many doctors, it's a bit daunting. I don't even remember the pedi in South Carolina. Plus,  do they even keep records that long? That began over 15 years ago. I haven't been in SC as a patient in 10 years. So how the hell do I get or even FIND those records. And considering my shaky, premature birth and broken blood vessels and spending weeks in the hospital, I want THOSE records too. So 2 hospitals in Illinois (possibly pediatric records since I lived there a while), 1 in South Carolina, plus that pediatrician, 1 in Tennessee plus all those doctors and the ones in Virginia. I know all the local ones. And the hospitals. But how long do they keep records. I'm coming up on 26, in May. Plus I'm pretty sure you have to pay them to give them to you. It seems a bit daunting. And at least some of them will likely piss me off (the docs who brushed me off/yelled/said it was anxiety etc).

Saturday, August 16, 2014

Another Confirmed DX and Vanderbilt

I have officially been diagnosed with Insulin Resistant PCOS. I went to my favorite GYN and he did a bunch of blood tests and I got a call the next day saying my results were positive and they were calling in a prescription for me. So there's yet another diagnosis. Not sure how ever meds are working or if they're making a difference just yet. I'm supposed to titrate up to twice a day but it causes mild nausea so I was trying to acclimate myself to it.

In other news. I received my packet for Vanderbilt. It's very thorough but my appointment is 8 months away. I have two appointments so far and the letter said they'll schedule the tests and send me that too. So, let the research and countdown begin! Well, as much as a broken cell phone will allow anyway.

More later, it's time for breakfast and meds.

Tuesday, July 29, 2014

Doctors everywhere

Ok so apparently ALL of my tests other than the 2 hour glucose came back negative/normal. I hate even everything shows normal when I know something is up. My neuro said that doesn't mean anything in regards to neuropathy, that it could just not be progressed enough to show. She adjusted my migraine meds so instead of taking as needed for migraines, I take it daily for the symptoms.

My EP said since the meds aren't helping to just stop the ones he ordered and switch back to a beta blocker as needed and try for Vandy. All the paperwork has been submitted but there's a wait (long one, possibly very long). He also said that he doesn't think a pacemaker would ever work for me where the benefits outweighed the bad. Though he did tell me when I asked, that during the tilt table test I had in 2011, my heart stopped for 10 seconds. But that my MAIN problem was fast heart rate and couldn't figure out which pacer I was talking about when I told him about the one in the groups that helps with blood pressure too. Idk. I'll look it up later. I didn't ask about an ablation. He did say the beta blocker would/should help with the PACs and PVCs.

Thursday we take SDiva back (3 hours away) to her gastroenterologists for her follow up. If she needs to be seen after that we'll switch (probably) to the local one since our insurance is different now. JSmiley is being seen Friday, also with stomach problems. I believe she has dairy issues as well or maybe IBS too. Who knows.

Also, I'm glad to see one of these being shown as a dx. It's nice being taken seriously.

Saturday, July 19, 2014

Doctors, Tests, and Pain... Oh My!

I know it's been a while, again. My phone broke (charge port) and I really can't afford to replace it. So let's see.

I got a lawyer and am appealing the SSI denial.

I went to my neuro over possible neuropathy, the nerve biopsy and nerve conduction were both normal but she says you can still have it regardless, but she also said she's leaning more towards compression palsy. I had several blood tests (of which I do not know the results), plus a 24 hour urine (don't know the results), and a 2 hour glucose, which came back elevated. My fasting was 84, 1 hour was 186 and 2 hour was 214. That's pre-diabetic/diabetes range. So I was sent to my PCP who did an A1C (normal - 4.6) and an insulin resistance test (still waiting). She mentioned I needed to get back into counseling (for anxiety and depression, these illnesses are rough on the mental state as well), that anything further would require a specialist, that she strongly urges me to keep trying to get in to UVA or Vandy, and to see my GYN about PCOS (an ultrasound in 2010, "appeared polycystic").

So, after two MORE vials of blood (on top of the 6 last week), I left my PCP, called my current GYN that I'd had to see with my former insurance. Kept on hold forever then sent to voicemail so I called my preferred GYN (who accepts my new insurance) and scheduled an appointment to see about PCOS.

Called my EP, because in 2+ months I'd heard next to nothing about my referral, plus I'd gotten an email from my hospital interactive chart saying I had new test results. Of the 13 strips I called in, there were PACs and PVCs, mainly sinus rhythm, some tachycardia (mild to moderate). I asked about the auto trigger (no response) and the referral. They said UVA also denied based on insurance but gave me the number to call with my new insurance to try, UVA said they don't/didn't deny based on that, that my report was incomplete and didn't contain my demographics, and that their medical director had reviewed my case and strongly recommended I try Vanderbilt. I told the woman that we'd tried and been denied there based on insurance but that I supposed I could try again with my new insurance. If they deny again then we can move foreward with UVA. So I called my EP, the nurse called back with a number but it turned out to be the autonomic dysfunction clinics fax machine number so I had to google, but finally got ahold of someone who started a chart and another who input my insurance information.  Then called my EP BACK to tell them, that Vandy needed to either speak with Dr. M or a nurse. They called back and said they had requested the necessary packets from Vandy and would call me back next week, they just wanted to keep me informed.

I really HATE HATE HATE playing phone tag. I know all these offices are busy and it isn't THEIR fault my battery dies fastish and needs to be turned off and charged (I have an actual charger for JUST the battery) so I wind up missing half of the returned calls. But I call each and leave a message, they call back and leave a message, I have to call back and leave another, and so on and so forth. Or we wind up speaking but then I have to do something and call back and phone tag starts all over. At least my calls were all returned promptly/reasonably this time...

So I have two more appointments this month and at least one (at this point) for August. I'm exhausted an feel like a pin cushion.

I'll try to post this but my battery is drained so it may have to wait. Hopefully next week brings good news from Vandy/my EP, and lots of test results.

Friday, May 30, 2014

Rest In Paradise, Beautiful

I took Callie to the vet yesterday. She'd been acting weird for a few weeks, hiding/sleeping a lot so not as "around" to monitor/watch. Once she quit, I became concerned about her very quickly and yesterday I took her in. Turns out, Callie was (most likely) born with Feline Leukemia. There is no cure.

She had lost a lot of weight. Practically just bones with a fur coat. Now, mind you, she's always been on the skinnier side, but this. This was awful. She was barely eating and drinking. I'd try to entice her with a tin of tuna and she'd barely make a dent in the small cans (yesterday she probably only managed a teaspoon of tuna). I tried syringe feeding her a creamy-ish broth. She ate just a bit over a teaspoon full. I tried to hydrate her with the syringe. She ate the broth, and drank the water, and a teaspoon of tuna. That's all she had in 2 days before heading to the vet the last time. She couldn't control when or where she used the bathroom. She still just wanted to lay around and cuddle. She was dehydrated. She was anemic. She was sick. The vet agreed with my aunts assumption and asked if I'd consent to the tests for cbc and to see if she had leukemia.

If she hadn't been that sick with leukemia, she could've been saved. Unfortunately she did. And there was very little (nothing) that could be done. I couldn't make the decision to euthanize her right then so we brought her home and let her cuddle the whole time and sleep with me again last night.

I fought with myself the whole time. I knew she was really bad off. I knew I was only prolonging her suffering but I couldn't rationalize choosing to end her already short life. Even if everyone (including 2 vets) said it was the best option (as opposed to letting her get sicker and sicker and basically waste away). I couldn't rationalize the what ifs. What if she got better (she'd never get healthy, but what if), what if she could live for months. But the rational side of me said she didn't have months and whatever time she had left would be in suffering.

Then I was faced with the task of actually DOING it. How could I schedule something like that. How could I cope, knowing I'd never see her again, never watch her play with her catnip toys, never jump up on the counter to try and steal a bite of my food instead of hers, never go in the kitchen to find her lounging on top of the fridge or the pantry shelf, or on the heater or air conditioner. In a window. Never to complain about not even being able to pee with out a cuddly cat on my lap or a furry voyeur while I bathe. Never again to take a nap together or just cuddle. Nor would I get the amusement of seeing her pounce on Big Daddy's feet, run and jump and cling to his clothed leg, or follow underfoot when she wanted his attention. So many things she did, that she'd never do again. How could I take her, knowing it'd be the last time.

My face was the last she saw, my voice. My hands were the last to pet her, one last faint purr in the truck. My arms were the last to cuddle her. I hope she felt my love. I hope she knew how much I care.

But I'm broken. It hurts SO much. I cried so hard. So hard. I just can't believe she's gone.

Saturday, May 24, 2014

In Which Xyrem Makes Me Feel Like An Ass

This morning sucked. I think I'm going to stop taking Xyrem. I was hesitant to take it this whole time leading up to finally getting it prescribed because of the what if factor. You know, with kids. You never know when one will need you, when one will wake up sick. Or if the house caught on fire. Big Daddy can sleep through anything, and often does. It takes FOREVER to wake him.

I feel like an ass after my most recent night of sleep. Bad. Like to the point of tears. JSmiley has a cold and her doctor is closed until Tuesday so I've been giving her that natural cough med for 2 years and up and normally it works. Apparently it quit working after my second dose of Xyrem. I downloaded a sleep cycles app to see how my sleep goes and it has a record sound feature to see if you talk in your sleep. Well, apparently J started coughing about an hour to 1.5 hours after my last dose because I have multiple 6 second up to 20 second and one lasts more than a minute (not full of but featuring) of her coughing, crying for me and her pacy (which she'd obviously lost) for 20+ minutes off and on. The only two times I acknowledged her, once was a soothing shh and the second was to snap and tell her to stop and no (when she asked me to find her pacy). I get cranky when I'm tired and I don't remember any of this but I feel SOOO fucking bad that I'm crying because she was crying for me and I did nothing except get mad at her and slept through the other 19+ minutes. I know I was out of it, at 7+ I was loopy as crap and had to go back to sleep so at 5 when she needed me, I was useless. This is why I was so hesitant on taking this stupid medicine in the first place.

Big Daddy keeps telling me it's not my fault, that I can't help how I react (or don't) when I'm sleeping, and that's true. BUT I wouldn't have been completely out of it if it weren't for Xyrem. Prior to the 2nd dose, I woke up I believe twice in just under 3 hours. I was able to sooth J, etc. After that second dose, I wasn't able to respond when my baby needed me. When I woke up at like 7:30, 4 hours after my 2nd dose, I felt ridiculously loopy and had to lay back down and sleep for another 2 hours. I just don't get how 1 dose I'm up and lucid in under 3 hours and the next I'm out cold for 6. I know the literature says you'll need time after the 2nd dose but this is ridiculous. It's the same dose!

But I feel horrible. I know some parents cry it out but not me. My baby was sick and crying for her mother who was RIGHT THERE but not answering. I feel like the worlds biggest asshole. My baby needed me, and I was not there. What if she'd been puking. She's been coughing so hard she's gagging and occasionally puking. What if she'd puked or gagged and I slept through it. What if she couldn't clear her airway? What if the house caught on fire and I couldn't react. Big Daddy sleeps through 99.9% of all alarms. He'd never wake up. I can't risk taking this medicine, ESPECIALLY not while J is still sick. I feel it's not safe for me to take it with children in the house. It basically leaves BOTH of the adults in the house incapacitated. So everyone is vulnerable.

I'm glad it helps most people but so far, it's not looking like a long term thing for me. It does it's job so it works, it's almost 6 PM now and I'm just now feeling even the slightest bit tired, (no energy, I'm just not tired like normal) so it WORKS, but it's just too risky. I woke up with a headache, then cried for a while after listening to those recordings. I'm not tired but I feel like shit. I can't even think about this morning without tearing up.

Tuesday, May 20, 2014

Random rambles

Still 'truckin' along with the holter. I'm kind of meh about it at this point. I only push the button for big events or things that freak me out. I've decided to ask for the auto trigger. No maybe. Definitely. I don't know when I SHOULD or shouldn't push it and I'm not bothering if all the stuff I'm used to is within normal limit. So I want a long term 24/7 recorder that way it will get everything and my only anxiety will be whether or not my heart is going to act up.

Speaking of acting up. I've been working on this blog since last night. Do you know how HARD it is to mess with code on settings and features from a PHONE? Specifically a phone with a cracked touch screen? No? Ok well I won't bore you. Suffice it to say I did what I could with the patience I have and the rest can bite me. I edited some of the posts, just pictures and occasionally spacing (if I could, it wouldn't always let me). The pictures posted from my phone always show as "original size" as a default and apparently "original size" comes in two sizes. Microscopic and Ginormous. So it was messing with the layout and in turn, me. I fixed the ones visible on the front page (except the last one but hopefully this post will bump it to page 2).

I've been working on this blog post for days as well. If only I didn't have to expend any energy in order to be coherent and functional. I had the want to blog, just not the will to get it done. That happens more than I'd like and not just with blogging.

I had my appointment with Dr. S, my neuro. Overall it went well. I took my notebook with some info and rattled it off with examples and while she mentioned that the symptoms are broad and could be anything, it is all also symptoms of neuropathy. She mentioned it could also be some type of compression neuropathy, where if you compress a nerve it happens even to mild degrees. She said she couldn't remember the actual term but mentioned compression palsy (like Bells Palsy?) or something. Anyway, since I get my thyroid tested pretty much yearly and it's always normal she decided not to test that but did order a nerve (or muscle) biopsy and a nerve conduction test. Both are done there, by her, but only on Fridays so my tentative appointment is JULY 18!! They did say that they generally have cancellations so they doubted it'd take that long. They're confident that it'll be before then so they didn't even bother to print me a reminder (with my OK).

Dr. M's office (EP) is really annoying me. Last time I tried reaching them, it took me getting an attitude over voicemail to get a call back. This time, I've left 3 messages with all my info asking for an update because they told me to give it about 2 weeks and call since Vandy declined to take me (my insurance) and they had to figure it out but that it'd "slipped through the cracks". Hence ME having to call if I hadn't heard in 2 weeks. It's been over that and I called Thursday, Friday AND Monday (yesterday). During or before lunch. I know it's dependent on the doctors getting back to them and there's not many places to send me plus there's my stupid insurance but still. I'm not going to call today. I may just call twice a week. Hell maybe I should wait until I switch insurances but it'd still be under the same umbrella, just a different HMO. It's open enrollment but the different HMO wouldn't take over until July 1. I need to get that ball rolling too. I'm sick of the one I have but I have this fear that they'll be brats about covering things until the other takes over, and that I'll have the same issues as I currently do with everything needing prior authorization, denying things, not paying for some visits/procedures, and having to pay for some meds out of pocket. Granted, no insurance would be worse but this one is SO stressful.

Anyway, in closing. I have a gmail, twitter AND YouTube for this blog. The twitter is @MomWithDys. The YouTube will probably be even less regular than the twitter and blog but I wanted one blog specific for any Dysautonomia/health videos.

Saturday, May 10, 2014

Holter Monitor Panics

I'm still irritated with this monitor. I did manage to send in some readings the other night. I am HOPING this thing catches something. The tech I talked too knew exactly what I was describing when I mentioned symptoms and even further completed the description for me. I'm trying not to panic but I don't know how well I'm succeeding. I still don't know what qualifies as a "push me" moment. I don't want to record a bunch of nothings.
I didn't hear anything after sending in the recording and it had 2 full days so I'm panicking about that too but it sometimes takes a little bit to get messages to/from my EP. PLEASE don't let me down.
As a side note, I really hope it's worth it. These patches are making me itch like crazy and leaving lasting red blotches. The result of 7 days is pictured. I figure by the end of the month it's going to look 4 times worse. I sincerely hope it's worth it. It looks worse in real life too. :/

Sunday, May 4, 2014

I'm going crazy

I'm already irritated with this monitor. I've had it on for 2 days and I'm already going stir crazy. I *think* I caught something yesterday morning but I'm not sure. I'm sitting here constantly waiting on SOMETHING to happen so I can record it. I'm not even sure WHAT warrants recording. My normal tachy events usually just have the docs shrugging their shoulders and telling me it's normal, just fast. I can't MAKE it act up. I can't make it go bradycardic or start with the palps. I really want something called the auto trigger but even then who knows if my heart will cooperate. I'm going stark raving mad over here.
PLEASE let something happen. Multiple somethings preferably. PLEASE PLEASE PLEASE!

Monday, April 28, 2014

Appointment Rambles!

Today's appointment was surprisingly good. I know I hold a lot of stock in past treatment/first impressions, especially doctors. But she surprised me. She seemed more knowledgeable and she said she'd been discussing my case with Dr. M. She told me to start salt tabs and REALLY try to increase my fluids more and suggested compression stockings (which I already have) and said the next strength up would possibly be helpful. She was really impressed with my documentation and said it was a good thing.

She didn't want to do the EP Study at this time but ordered another 30 day loop monitor except this one I don't take off except to shower. I'm not sure if I'll have any success but it's worth a shot I guess. I go back on Friday for that then the end of July for a follow up with Dr. M. My file as usual says (JM MD only), first she wrote 6 months, then 3, then 2 months or 6 month follow up so that was a bit spastic, plus they are actually advocating for me to go to Vanderbilt, she wrote that in the notes but when the scheduler went to schedule it, it'd been pulled so she has to get it put back in there. If I don't hear something by Thursday morning, I'll call and remind them.

I called the pharmacy and I had to confirm that my co-pay is $0.00 ( O.o ) before they can procede. Still waiting on YET another phone call. >.>

But my patient summary included POTS for the first time! It's 3 pages long, one being mainly meds and stuff. Anyway, more later as I get it.

Saturday, April 26, 2014

Writing, writing, writing

I've spent all day, off and on, writing down things in a 5 subject notebook. I'm definitely not going to fill it any time soon but I hope it'll come in handy. I get all nervous trying to get my point across to doctor. Especially one I've had any amount of trouble with. My EP I'd only take my stats/vitals. His PA, I'm taking every piece of info I can find in addition to the stats. Same with my neuro because, while she's a million times better than the PA, she's made me mad and brushed me off before. Even with my MSLT positive for N, she refused to believe it until I went to a second sleep specialist for consult. The one who simply said, to the effect of, "If it's positive, it's positive." But that it could ALSO be REM behavior disorder. I said no at the time because I wasn't aware I mildly act out dreams. It wasn't until Big Daddy described something later that I realized I do in some instances. When I told my neuro, she brushed me off. Though it was her that suggested RBD as a possibility to begin with. >.> SO, mostly ok, needs improvement.

I set up an appointment to see about neuropathy and I'm afraid of being brushed off again so naturally, I'm writing down a lot of the different neuropathies. >.>

Speaking of neurology. I had a missed call from the pharmacy. Called back less than 10 minutes later, and NATURALLY, they're closed on the weekends. Closed enough to call me then not answer 7 minutes later. So, point for calling on the weekend, despite being closed. But -1million points for everything else. Including calling on the weekend while I'm asleep. Waking me up, then not answering.

So much shit pisses me off. >.> OBVIOUSLY if you want ANYTHING done, it has to be done by you.

Friday, April 25, 2014

Everything and Nothing

I need some teeth pulled. Like yesterday. I don't know what they are, molars or wisdom teeth but either way, they need to come OUT. NOW. I'm in so much pain, it isn't even funny. All day every day, the pain moves. Either the base of my skull in the right, my jaw, the right side of my nose/sinus, right side of my head (top), below my ear. I don't know what to do. I am taking every medicine I have for migraines, and it's not doing much. The teeth are trying to come in and there's no room. It does it every year but the last two were the absolute worst and it gets worse each year. Last year I could barely open my mouth for over a week.

On top of that, earlier this week, a stomach virus hit everyone BUT Big Daddy. In rapid succession. It lingered with me and I got dehydrated. My heart rate wouldn't go below 100 (except every so often, and only briefly), my blood pressure tanked when standing. When it tanked, I had severe heart palpitations, I also had chest pain and shortness of breath. I went to the ER and got 2 liters of saline, something mild for pain, and nausea. I didn't expect much else. I'm not sure what happened but I *think* the end of the IV port nicked my vein elsewhere. It's really sore almost 2 inches from the puncture site. When he started the second bag of saline it immediately hurt where it's sore now, and again when he flushed the port. It hurts to extend my arm. Well, more sore than pain.

To top it off, I fucked up and called my EP (last post, I believe). They wanted me to come in sooner. To see the physicians assistant. I nearly had a full on panic attack. I REALLY hate seeing her. I'm already anticipating a fight. I don't know what I want. All I know is no meds are fully helping, none of the tests have shown heart palps but I've had them since 2007. I think, at MINIMUM, I want an electrophysiology study. I really want to talk to Dr. M instead. I'm going to try to take a notebook full of information and hopefully I don't get a brush off. If I do I'll probably file a complaint at the very least. And make sure I NEVER see her again.

I've also scheduled an appointment with my neurologist about testing for small fiber neuropathy (and autonomic and peripheral neuropathy). It's next month. I got a call on Monday that my insurance had approved the Xyrem (FINALLY) and that they'd faxed the pharmacy the acceptance letter. I called the pharmacy yesterday and they haven't gotten anything. WHAT the fuck is going on with that shit?!?! It takes a million phone calls between all of us just to get the approval processing. The woman at the pharmacy said they hadn't gotten the fax (is there a block in the lines or some shit?) but she'd "send it on" to someone who is supposed to call my insurance to confirm. No call today. Of course. I'm getting SO fed up with this shit. I called either my doctor or the pharmacy WEEKLY, and now I'm still calling. It's fucking ridiculous. Several "we called, they say they faxed but we didn't get anything". How many times does a fax "get lost"? I mean really? >.>

Thursday, April 17, 2014

I'm That Girl

I'm pretty sure I temporally turned into the patient office staff laugh at/hate. I called my EP several weeks ago over compression stockings. Never got a call back. Called yesterday and left a rambling voicemail requesting a call back. I identified myself, my date of birth, everything they normally ask to confirm you're you, everything my neuro needs to call back, no call back. Called today and left a pissy voicemail spelling out my name. My phone number is in my chart. The info needed to access my chart is in the voicemail. So WHY no phone call? Perhaps because I didn't rattle off my phone number? Thinking about it after the fact, the instructions say leave name and phone number. I think I left it at least once but still. It's IN my file.

But I've seen medical bloggers blog and laugh about patients calling and leaving no identifying information. I'm embarrassed. Rationally, I know it's not TOO bad. I did leave plenty of identifying information, they have my number (they use it to reschedule my appointments every time), I left everything else and who treats me. But still. I want to call tomorrow (and leave my number) but I'm embarrassed and afraid they'll remember the crazy chick who keeps calling. >.>

Sunday, April 13, 2014

Poor Man's Tilt

So I decided to do a series of Poor Man's Tilt Table Tests so that I could take the readings to my EP next month to further prove my point more that just him saying he suspected I have POTS. I've been researching so much this month it isn't even funny and trying my best to log information and stats so that I'll have plenty to present to him.

I did two different ones in two days. The first one I did was only 5 minutes. My blood pressure did not drop in that time period (though it did fluctuate on occasion) but rose, fairly steadily. I didn't do longer than the 10 minute one and I'm not sure about the full criteria for diagnosing NCS but I've already gotten it from an extended regular Tilt Table Test where my BP dropped and my heart stopped (asystole). So based on the face that it takes longer than the guidelines for OI for my BP and heart rate to drop (but does during the extended tilt), and the fact that my HR rises significantly (both immediately and sustained in a steady climb over the period of the PMTTT) I surmise that I have both NCS and POTS. Here's the results from the two I did today and yesterday.

Yesterday I did the 5 minute test. Immediately upon standing my BP rose from 113/77 HR 72 (laying) to 132/82 HR 99. That immediately upon standing reading made my PP 50. However it dropped down to 116/85. I guess that might be positive for OI as well but then it raises steadily and/or fluctuates. The data is obviously bottom up in both instances. In every instance it jumps, both BP and HR when I go from laying to standing, then drops down a little, then slowly gradually (mostly) raises. Also raising is my heart rate. From 72 to 122 in 5 minutes (which is 50 bpm rise) and 78 to 134 (a 58 bpm rise). Which is well over the 30 pt increase in 10 minutes criteria for diagnosing POTS through a tilt.

But also, I never noticed before, but my pulse pressure also drops. The lowest recorded was 18, that I remember. If you noticed, 118/100 isn't the only weird reading I got, however I redid it. I got an error reading then it went back to normal so I erased the other reading and put in the "normal" reading. The second time (the one recorded), it stopped reading after that. I kept getting error readings so I quit trying, I got two errors when trying to repeat the 9 minute reading and 2 errors when trying to actually GET the 10 minute reading, which is why there are only readings for up to 9 minutes and not 10. I'm not sure what that means. I'll report that too.

Thursday, April 10, 2014

Pains and Points

Big Daddy scored points today. I'm always complaining of pain, specifically in the neck/back region (but also others). I go through so many products it isn't even funny. thermacare, muscle rub, icy hot, etc. The gels, the sticks (like deodorant only muscle rub), the creams, patches, you name it. I need it. Big Daddy usually does the honors even though he hates the feeling of creams/lotions/gels on his hands. It's nice that he does that even though he hates it. Which is also why he buys the sticks of it. He doesn't always have to rub it in by hand.

Anyway. Tonight he goes to the store with the older girls and said he was going to bring me a surprise. They didn't have what he originally planned but he took a trip over to the pharmacy section and bought some Stopain spray. It works SO well. He also looked at I'm guessing caboodles (by his description). He bought me a big travel toiletries case that I use for most of my medical things. Meds, sugar testing things (for if I suspect hypoglycemia and to raise it), creams, rubs, eye drops, nose spray, anbesol, etc. Just basic necessities and comforts. I have my heart rate watch/strap and epi-pen in there too. If I had more than just the bp machine I'd be able to use a larger case but I'm fairly sure it's the only thing I currently have that doesn't fit in the case. It's kind of irritating and sad thinking about how I'm not quite 25 and need/use all of that and could probably use more.

Wednesday, April 9, 2014

Neurology Follies, Ped Gastroenterology and a road trip.

Still waiting on my prior authorization. I didn't call on Monday and Tuesday we were at the Pediatric GI for SDiva. It took us almost 3 hours to get there. Big Daddy went with us since I most likely wouldn't have been able to make the drive on my own. So I called first thing this morning and left a voicemail. The nurse called me back around lunch and said they HAD finally received the first form and sent it back but that they'd sent ANOTHER one and now they were working with that form and she'd keep me updated. I'll probably call back on Friday. She said normally the pharmacy does most of that work so she was surprised they were sending it to them. This is driving me crazy. If we don't get it situated soon and a follow up scheduled I'm going to go ahead and request an appointment for neuropathy symptoms.

As for the Ped. GI, like I said, it took us almost 3 hours to get there. There was road work outside the city and in the neighboring cities, with detours and everything. One lane traffic on the interstate doing max 25 miles per hour. We got there at 11 for a 11:30 appointment (after leaving home at 8:20 AM). It was nearly 2 before we saw the doctor, so a little over 2 hours of sitting there. The doctor asked about a diagnosis that had been written down, apparently either her normal pediatrician suspected a possible cause or something because he asked if it had been diagnosed with a scope and I said I'd never heard of anything so he looked again and saw a question mark beside it meaning the doctor suspected it. Anyway, he ordered both an endoscopy and a colonoscopy. He wanted to do it next week but Big Daddy needs advance notice to get off and I can't do it alone much less repeat it next week.

The trip took a lot out of me. I wore my compression stockings and still felt minor discomfort in my legs, my arms were losing some feeling if they weren't kept down. I fell asleep at least once (Big Daddy said twice but I don't remember the first one) on the way home and literally felt as if I couldn't move once I got back into bed and relaxed. Then I slept all night. Big Daddy laid out the girls clothes for school, made sure their homework was back in their bags and woke them up this morning for me. All I had to do was fix their hair, make DCourtley's snack (kindergarten eats last so they require a daily snack). I went back to sleep shortly after and slept until after 12. I feel much better now but still not 100% but still, I didn't expect that to drain me QUITE as much as it did. I mean we were home before 5 and I did next to nothing until bed and slept all night. But I guess it'll give me some idea of what to expect next time. I'm for sure taking headphones or something, and maybe I need to invest in stronger compression. The ones I have now work well for around the house and for a while even under strain but I still notice discomfort after a while, whether sitting or whatever. And I want to get some compression sleeves too. My arms are just as bad as my legs. I was able to recline a bit but full on laying isn't an option. I did take plenty of fluid to stay hydrated. And we stopped about 3 times to stretch legs etc on the way there. I'm not sure what else I can do.

We have to go back next month and either stay at the Ronald McDonald house (if they have an opening) the day/night before or leave around 4:15 AM the day of. THAT will REALLY mess with me. My narcolepsy will go crazy not to mention my dysautonomia. That is one of the options but honestly, the least preferential of the two. I'm not sure what to do about DCourtley. We took her with us this time because we had no way to get her from school (since it was after 4 when we got home) but I don't think it's necessarily right to keep her out every time. I'm fairly certain we can find her a way TO school but I don't know about home. And I don't feel comfortable leaving JSmiley with anyone but I don't know if we can bring her. The nurse asked if we'd be able to find childcare or if we'd have to bring them. Of course, it'd probably be better if we COULD find childcare for them as we'll be waiting on the procedures plus 1-2 hours in recovery for the sedation. That's just yet another thing to figure out.

Anyway, I'm still not feeling that great so I'm going to go relax for a bit. Later.

Sunday, April 6, 2014

Neuropathy and Neurology

Still waiting. Always and forever waiting. I called my neuro's nurse on Friday (4/4/14), a week after the first check call. The nurse said she had called and they said they were waiting on a form but that she'd never gotten one. Which confused me so I reminded her about our conversation last week where she'd said the pharmacy sent the prior auth to the old number (which, let me remind you, is on the first floor of the same building, in their former office which they shared with Urology, that is still there). I don't understand why they wouldn't/couldn't take it up there. Anyway, she said she still hadn't gotten anything, that the number they sent it to the second time was correct but sometimes things don't go through. And to keep calling her if I hadn't heard anything.

It's been nearly a month (the 10th is a month I think) since my neuro sent in the prescription. That is absolutely ridiculous. I suppose I'll call tomorrow during lunch and see if they'd received it yet. And Wednesday. And Friday. I mean, it's a fax, not snail mail. And considering the fact that my neuro pushed for this at EVERY appointment after my narcolepsy diagnosis, I really shouldn't be the only one trying so damn hard to get it approved. Plus, they wouldn't schedule a follow up until after I'd gotten everything situated. They have to see me regularly on Xyrem, I believe she said every 3 months and I think they do blood work at those appointments. But scheduling depends on everything getting situated.

I don't know but I think she's the doctor I need to see about testing for neuropathy. I've got almost/all symptoms of Autonomic Neuropathy and probably half of Peripheral Neuropathy symptoms. I never knew there was a connection to those symptoms but like everything, I mostly ignored them (well, as much as one CAN ignore stuff like that). Sure it could be coincidence, but I don't think it is. I'm sure I could ask my EP next month but I'm fairly sure he'll just tell me that's my neuro's jurisdiction.

I like my EP better to be honest. He listens more and I don't feel like he brushes me off. I may not always get what I want at that appointment, but it's never a no. I really hope I don't have to fight hard for this. It's so exhausting just constantly fighting for my health and recognition and even life. Anyway, I'm getting sleepy. Time to rest. <3

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.***

Friday, February 28, 2014

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.

Tuesday, February 25, 2014

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.