Day 1 of Medicine

Day 1 of Medicine

I woke up 10 minutes late this morning. Insomnia kept me up long past JSmiley finally falling asleep. But I did it. Didn't take my meds until 9:20 (wanted to take at 9) because it took a few minutes to do orthostatics. Which got me thinking, laying to standing my heart rate increased 31 bpm (I did laying, sitting and standing). And my bp rose sharply from laying to sitting. Isn't that one of the indicators of POTS? Ok so apparently (after skimming the entries since my appointment) I didn't mention that I might have it? I couldn't get a definite yes or no but he kept mentioning it and said some of my symptoms "fit". I'll ask for a straight answer when I go back. Perhaps my holter monitor results in addition to my bp log will get him to give me a straight answer without needing a bunch of testing?

Anyway. I'm not sure how I feel. My HR is definitely slightly lowered. Sitting here propped up (couldn't stay fully upright) my heart rate is in the low 70s. It's usually mid-high 80s or even 90s. The true test was walking up my stairs. It usually gets to 125 (lowest) and stays up (above 100) until I'm back downstairs sitting. It only got up to 115 and while I was sitting dropped back to the 80s so the Atenolol is definitely doing SOMETHING.

The Midodrine I'm not as sure about. it's been pretty normal except one fluke. I'm not sure why it reacted like it did but it read 117/104. I was dizzy at the time and checked it again 3 minutes later and it was 125/82 so I don't know. Lounging it's 114/72 so I don't think it's doing any raising (like I said, I think that one number was wrong but I don't know why). And I feel off. My scalp itches and other parts. I'm slightly nauseated. I feel kind of dizzy, not imminent syncope dizzy, just off dizzy. Big Daddy has the kids and I'm home alone. So I'm staying on the couch. I hope my body adjusts fast or I'll be home bound for a while. I'm supposed to go Tuesday to fill out papers at 9 (when I take the meds) hopefully it doesn't take a while and I'm not dizzy. And that my scalp quits itching. Itchy scalp drives me insane!

Little of Everything

World Breastfeeding Week is August 1 - 7. I'm sad that this will be my last year participating. At least for several years (if not indefinitely). I've decided to postpone starting meds until this weekend. Big Daddy would take about an hour to get home if I needed him and that's assuming he was working near the shop. I could've started today and my neighbor could check on me if I reacted badly but tomorrow it'll be just me and the munchkins for several hours with no one to help if I need it. I figured this way, Big Daddy will be off work and can help me out until I see how the meds affect me.

But I'm dealing with mild engorgement so I let JSmiley nurse once today and maybe once tomorrow. I'm undecided. I wasn't going to but she wanted it and engorgement is uncomfortable. Since Sunday at 8 PM, she didn't nurse that night at all (I was at the sleep center) or Monday until 6 PM (same reason) then once late that night/early the next morning (like probably 1 AM) then none Tuesday or Wednesday. Once today and that's it. So at least I got to participate during my last World Breastfeeding Week. Seeing all the pictures people are posting in my mommy groups are making me sad knowing it's over for us.

WHOOPS! Totally started a blog post yesterday morning (it's almost 2:30 AM) and forgot to finish and publish. I'm glad I put off starting meds because apparently you have to stay sitting up for a while on one of them. I spend about 80% of my day laying flat or lounging. How much "up" do I need to be? Should I sit mostly upright with my back to the back of the couch or will propped up with pillows, lounging, work? All I REMEMBER being told is to take it in the morning and around 4 or 5 in the evening. Apparently when I say "I have no energy" he didn't realize that meant "sitting upright is a chore, a chore I have no energy for." Also that "my sleep schedule is so messed up it's crazy" meant "sometimes it's morning before I even fall asleep".

The post I saw online said her doctor told her not to lay down for 6 HOURS after taking Midodrine. Wtf? REALLY? Also, he told me to do recumbent exercises like the bike etc "like the ones that recline, the more layed back, the better". Basically he said to get the little ones (easier on me) since the upright ones would probably be too much to handle. I asked about yoga (remember it's on my "maybe I'll do this to occupy my chronically ill life" list) and he said "Maybe, some of it requires too much on your part " Great. How can I admit I'M TOO SICK FOR YOGA. That kind of works in my favor. Big Daddy is always "push yourself" and "I think you can do more than you admit" (he still has some trouble grasping the limitations, he's getting there). He was at the appointment (which btw included a young student doctor who looked younger than me, baby face and nervousness) and heard him say it. I can do what now? I'm not "that sick" say what? You heard the doctor, most yoga is too hard. Granted a lot of it takes working up to, is advanced etc. Maybe I can do some beginner? I don't know.

As proof of my "can't stay upright" thing, when I started this addition to this post, I was upright. I'm now slouched to the side at a 60ish° angle with my elbow propped on/supported by a pile of blankets, one leg tucked under the other, the other propped up, knee to toes roughly level with my right shoulder. Kind of comfortable to be honest. Granted part of the slouching could be that I'm tired. (I actually fell asleep before 11!!) But I woke up around 12:30 for some reason (seriously, they HAVE to figure out wtf is waking me up at night and stop it) and despite being bleary eyed originally, I got wide awake. I think I'll go back to sleep shortly.

Chest Pain and Holters

My chest is hurting and I can't breathe when I lay down and since I'm allergic to the sticky patches on the monitor, my chest is itching. I can't wait until 1 when I can take it off. I think I'm waiting until tomorrow to start the meds. I can't take the meds while I have the monitor on, he wants me to take the beta blocker once a day, in the morning (so I can't take it today) and the other one I'm supposed to start at 2 times a day, once in the morning (so that dose is out) but he said to take dose #2 around 4-5 so that'd be ok except I don't want to take one without the other. The one I CAN take is a vasoconstrictor (that's the only classification I can think of) and raises BP so I hopefully don't pass out and I don't want to take just it without the beta blocker to balance it out.

JSmiley hasn't nursed at all in over 30 hours. I'm sad. She's doing fairly well. I know when she wants it she's either thirsty, tired, hungry or a combination so I've been keeping food and juice on hand to give her and rocking her to sleep. She gets pretty irate if I'm not fast enough and that cry is heart breaking. We'll be ok, she seems more ok than I am (except those 2 times she's cried) but as soon as I gave her food/drink and/or rocked her she was fine.

Ok, chest pain and shortness of breath are doing better so if JSmiley is agreeable, I may try to get some more sleep.

Also, I find it amusing that every time I have to wear a holter or event monitor, it looks better than the one before. This one, when she first put it on and was setting it, I watched the ECG on the screen. I wish I could watch it still, that stuff fascinates me. Sadly those buttons are only for setting it and turning it off early (except the "event" button on the side close to my thumb that you can't see, I'm sure it's functional).

More later.

More Sleep Study and Insomniac Anxiety

I swear the universe doesn't want me to sleep. I couldn't sleep when I got home and I developed a migraine. Fun right? I still feel like crap. I actually feel like I'm circling the proverbial drain. Can't breathe, can't sleep, heart pounding, pain, just everything. I have a feeling my expectations for tomorrow are too high. I have SO much going on in my body but it feels like he's just focusing on NCS/IST I mean, surely a beta blocker isn't going to help everything. The shortness of breath is a real bother. I feel like SO much hasn't been addresses and one appointment isn't enough to get everything solved but I feel like utter CRAP. I WAS asleep but Callie decided to play with something at midnight and it woke me up somehow. I guess the scratching. Then the little brat hoped up on my lap and promptly went to sleep.

Yesterday was weird. No one really said anything about the heart rate dropping. The new tech (woman) kept saying it was normal to fluctuate in your sleep, true, but my fluctuations were 60-80. The 30s-40s were an ADDITIONAL fluctuation. I text mom about it and she called when she got off work and said she'd looked it up and it said 40 was normal sleeping heart rate for someone who is ATHLETIC. Which does not describe me, at all. I'm immensely irritated that every time I turn around, medical professionals are trying to act like stuff is normal. 1. No it's not, 2. even if it were normal, that normal usually pertains to healthy, active, athletic people. I am none of the above.

The rest of the sleep study was weird. I don't know how much I managed to nap. I had "dreams" where I wasn't sure I was awake, asleep, or half and half, but if you're half awake, doesn't that count as not dreaming since you have to be in REM to dream? It couldn't have been long though. It would take me several minutes to relax and 2 of the "dreams" I had, appeared as if I was just picturing stuff in my head, awake. Like close your eyes, think of something, and whatever you see, that's how my dream felt, so I wasn't sure if I was ACTUALLY asleep or just "trippin". But both of those "dreams" were about my cell phone, imagining text conversations so I THINK it was legitimate dreams. Though I've never dreamed where I was laying in the same position in my dream as in real life. It was disorienting. The second "nap" was after the guy left and the girl came in. She didn't put the pulseox on my finger and the LAST nap she didn't turn the light out. Oh well. I got fast food for breakfast and italian for lunch. The naps were disorienting and obviously my sleep issues don't like being timed. It wasn't "sleep 20 minutes", it was lay there and fall asleep plus dream all in 20 minutes". If it took 19 minutes to fall asleep, I'd get 1 minute of sleep, 15 minutes to fall asleep, 5 minutes to sleep. Can you imagine why it was so disorienting? I thought the male tech was joking when he said it was brutal. It was taxing. I haven't got off my couch except to potty twice since I've been home. Sure everyone is like "what's so difficult, you got to nap all day." Yea, not so much. I got to TRY to nap, but that was on top of a sucky nights sleep. Actually, to be accurate, they wanted to see if I could fall asleep (is it bad that I could with just 20 minutes, multiple times) and which sleep cycle I went to. If I remember 3 dreams, does that mean I went straight to REM?

And my naps last HOURS, not minutes. I can sleep hard for 4 hours and consider it a nap. 2 hours is a good nap too. An hour or less is a disappointment to me. 5 minutes damn near drove me batty. And to top it off, JSmiley isn't completely weaned yet (she's nursed twice since Sunday at 8 PM - it's Tuesday at 3:30 AM) so my breasts were hard and engorged. Talk about OW. I had forgotten how much engorgement hurts. Even hand expressing in the shower didn't help. Also, the use some kind of medical water soluble paste to apply the electrodes to you/your scalp. I have thick hair. He was generous with the paste. The electrodes were cemented to my head. OWWWWWW. The tech used a water bottle of lukewarm water and a wash cloth and one of those took 3-5 minutes of squirting, scrubbing and yanking. Did I mention I'm tender headed? Yea.

I NEVER want to do that again. Ever. I just want to hook a magic computer to my body and run a diagnostic program to find out EVERYTHING that is wrong with me and how to treat (if not cure) it. If only life were that simple. Maybe if I were an autobot. I had a similar idea when I was trying to conceive only it was an implanted button that was skin color and you'd push it and if you were pregnant it'd turn pink/blue depending on gender/sex (I'm putting both terms since there was recently a huge debate on which is the correct term to use - as usual) and would look like a pie graph if you were having multiples. All in one hpt and gender/sex reveal instead of waiting weeks, and it was good immediately upon conception, no waiting until a missed period or until the anatomy scan/birth. I know, I have an over active imagination. It was mostly wishful thinking just like the magic diagnostic computer. It sure would make my life a touch more simple. And I love things that make my life simple. Anyway, it's after 3:30 and my appointment is at 10:45 so I should try to get some sleep since I should get up at 9 (appointment isn't in my city) and I have to get Big Daddy up/motivated and sitter for the kids. Now if only I can keep Callie from waking me up AGAIN. Silly cat. She's lucky she's so cuddly.

Also, my follow up for the sleep study is September 5, tentatively. She said when they get the results/review/whatever they'll probably move it up. Ok, seriously, going to sleep, try to anyway.

MSLT

Someone remind me again why I wanted to do this?! Who would have thought a simple sleep study would be so much BOTHER! I want to go home. And it's only 9 AM. The tech said it'd be probably 4:30 before we're done. I'm so tired.

Got here at 9:15 and say outside with Big Daddy for a little bit then we both walked in. He left before I got wired up since he has to work today. Got hooked up and layed down, text Big Daddy and tried to go to sleep. I WAS able to but not very easy. Took a few minutes just to get comfortable. I also woke up a few times, at LEAST twice, possibly more. Woke up at 2 and could NOT go back to sleep. The tech came in to ask if it was a pretty typical night, what with being restless etc and I said yea, and then he told me he'd been watching my heart rate. I'd warned him that it probably WOULDN'T get high, but if it DID, it's normal for me. He thanked me for warming him just in case since if it HAD spiked he'd have come woke me up. But anyway, he said my heart rate fluctuated sporadically. I'm not sure why, he said MOST of the time it stayed between 60-80 which is normal when I'm sleeping but twice it dipped to 38 (!!!) and more than that down to the 40s. I don't know why. Neither did he but he said he would ask the doctor and I'll ask Dr. M tomorrow.

They provides breakfast (fast food) and then at 8 I tried to take the first 20 minute nap. I tossed and turned a but (despite being tired) and I MAY have dozed briefly. I'm so tired. I want to go home. I'm having SO much trouble falling asleep and this 20 minutes to fall asleep SUCKS. To add insult to.injury, my back has been aching all night and it's just getting progressively worse. And my chest started hurting last night and while laying it's pretty uncomfortable. Did I mention I want to go home yet?

Random Rambles

4 days until my appointment and 2 until my sleep study. The sleep study is going to irritate me. I have to stay there until 2-4 the next day (and then my appointment the day after). The regular sleep study was awkward enough. Strange place (it's a whole different hospital/sleep lab), away from my family, long time there, medical professionals, etc. And Big Daddy works the next day so he'll be next to no help (they say you can bring someone).

I went today to sign up for disability. It'll probably be a pain in the rear but I have my appointment (7th). I think my neurology appointment may be that day but I don't know. I need to call and find out and reschedule if it is. I need to call my primary doctor too, supposedly she's not there any more and if not, what I need to do. Ugh, so much to do. And I'm tired and sick. More later. Big Daddy might be taking me to the movies later if I feel ok.

Scheduling Rants

Now that my phone has more than 2% charge I can write. I'm going on 2 hours of sleep though so I will probably ramble. That typically happens when I'm sleep deprived. I'm so tired but sleep isn't happening. Actually, I was laying with JSmiley and a deactivated cell phone rang (neighbors phone died so she borrowed it and then got a new one). I have no clue how that happened but it was enough to jar me out of that place where you drift peacefully to dreamland. So I finished the last few chapters of HP7 and am now writing. Perhaps I'll try again afterwards.

Anyway. When last I wrote, I was still having trouble reaching my OB/GYN or getting a call back. I called Friday, Monday, Tuesday, Wednesday, Monday (answering service answered, at 5) and Tuesday. Sure it was semi out of their hands but the first Friday-Tuesday they didn't have the info so they couldn't call, didn't call me so they didn't even TRY. Called that final Tuesday and she had a list of approved birth control from my insurance. So that's done.

Then last night Big Daddy brings in the mail and there's a letter from my EP that said Dr. M had a change in schedule and *I* needed to call to reschedule my 8/1 appointment. Called this morning and the receptionist said "His next available appointment is August 30 at X:XX A/PM or August 31 at X:XX A/PM." Excuse me? Seriously? You send me a letter dated the 12th that doesn't get here until the 19th (different city, different state) instead of CALLING me, over something I have no control over and because you're a sub-specialist, you want me to wait a while MONTH because it conflicts with his schedule? How about not. I didn't SAY any of that since it would be rude but I definitely thought it. What actually happened was (M = Me, R = Receptionist)
M: "......................... I don't, I don't know............."
R: "You don't know... which one you want?"
M: "Yes, I've had this appointment since FEBRUARY and I can't wait another month to start meds, I can't...."
R: "Well that's all he has, he's not here today and on vacation next week and won't be in on the 1st and he's double booked."
M: "...................... I guess.... I don't..............."
R: "Would you like me to put in a note for the nurse to call you?"
M: "Yes, please."

Not 5 minutes later the nurse called.
She asked how I was doing and of course I was frustrated at the situation and it's a stranger (see, I can NOT talk to strangers in stressful situations) and I have only had 2 hours of sleep so I was practically in tears trying to explain why I couldn't forgo meds for a whole extra month. Sure I COULD but that's an extra month of not being active at ALL. There have been times over the past 6 months where I almost called and asked to be on meds before my appointment, unsupervised. Some days were THAT bad. I don't beg easy.

Anyway she cut me off and said they'd looked at the schedule and could put me down July 31 "That's a day sooner." A. No shit, really?! B. I was happy with MY allotted appointment. *I* didn't want it to change. C. It isn't MY fault the doctor needs several days off in addition to his 1+ week vacation. If I could change it, I'd be ok sticking with my original day/time. I'd even be ok with an extra week/10 days or so (I wouldn't be too thrilled the higher the number got especially though I'd try to manage). But a whole month? 10 days makes me cringe but is more understandable.

But seriously? So no one on other days (that he's there) will be affected, they'll get their normally scheduled appointments that they've been waiting 1, 3, 6, 12 months for, whichever, but because the doctor has had some things come up, *I* have to suffer until he has an "opening". I don't know WHY he needs a few days off plus a vacation, and I hope it's nothing bad but seriously. None of that is my fault. All in all the nurse made me feel like a brat. I didn't ASK for an earlier appointment. Not ONCE have I asked to be seen sooner. I've patiently waited my turn unless something else was offered (other doctors/tests with cancellations) unless I missed it (and then I still waited patiently) or it was inconvenient in which case I passed and it was undoubtedly offered to the next name on their list which I did not ask to be put on. :/

Ugh I need sleep. I don't even know if I had more to write. I suppose if I did I'll remember it later.