Thursday, May 22, 2008

Thanks for the memories

To celebrate being able to get to the bathroom without help and to celebrate repositioning herself from lying down to standing and from standing to lying down (head heavy!), all by herself, and similar small tasks, do you think Frida would:
a. take a short drive with the family so as not to overtax herself
b. go to a family member’s nearby home so as to get some social contact and relieve that housebound feeling
c. completely exhaust self to the point of passing out

Answer below.
Answer to Quiz
c. completely exhaust self to the point of passing out (Elizabeth would be proud!)

What can I say? We had 4 great tickets to a really great event we purchased months ago, and it was well worth it--once in a lifetime for the kids. But at the end, I came within (I estimate) a few seconds of passing out again. All the numbness/tingling returned, and I felt like I’d sucked down a bunch of nitrous oxide or helium. I was tired and shaky even from using the scooter; we were there about 3 hours and out of the house about 4 ½.

Excluding factors: was well hydrated, had eaten enough (enough protein as well), not overheated, not overcrowded in our section (only a few other people in disability section). No muscle relaxers this time, halfway through my typical moderate dose of hydrocodone (which I’ve taken since last fall when needed). Not given to hysterics, have not passed out or nearly passed out before. Maybe the brace is cutting off my blood flow? Oh, wasn’t wearing it in the bathroom. Hmm.

Imagine flowchart here
My internist says to:
-Ask at the follow up appointment tomorrow whether it could be related to the surgery.
-If not related to surgery, go to a cardiologist.
-If it recurs, go to the ER.

I told the internist that my perception of the ER is that I'd go and sit in the waiting room for 5 or 6 hours, the symptoms wouldn't have recurred in that time, so they'd blow me off or run a bunch of labwork/EKG that would show nothing and send me home with a referral to a cardiologist and I'd have to deal with billing discrepencies for huge amounts of money for months afterward. He said that’s true 95% of the time, but it’s that 5% that they can possibly find something and fix it which makes him recommend it. Not sure I’m convinced to go. As Elizabeth (and one of my doctors) would say, I hear horses, not zebras.

My typical pattern is an often very high heart resting rate (100-120) for several weeks, with occasional bothersome but benign arrhythmias. Now I alternate between very high rates and under 60, which I’ve not had before, and occasional very low blood pressure. I will have to find a new cardiologist since mine retired and I don’t want to go to someone by default (the replacement). I worry about a new cardiologist believing me. The former one did, especially since he had treated other family members. I liked him. We got along well. He got upset that my former internist didn't treat some issues that showed up on labwork (she couldn't believe it since I was very young and healthy then, and therefore ignored test results confirming what she was looking for). I dread filling out new paperwork, because who will believe all the medical issues? No doctor does until they see them in effect. They can't see all the horses for the zebras (they're thinking I'm hearing imaginary zebras, when there's a forest full of horses--this metaphor is getting really messed up).

No Yoga!
My husband joked with the hospital PT about me doing yoga. Not realizing he was joking, she said, "NO! She cannot do yoga!" We clarified, but her strong response was amusing and heartwarming given the number of people who think they can cure my spine with yoga in particular, or swimming or acupuncture or sitting up straighter or metal detox or allergy treatments or psychiatry or willpower or whatever. I have to say I know a number of yoga practitioners who are not yoga pushers; I can see people I know reading and thinking, "Did I push yoga on her?" No, you'd know if you did, because the people who do are very forceful about it. A few people preach to me about why I should be doing it and how it will specifically help me, despite all the contraindications against it for me. You'd also be amazed at the number of doctors who tell me to bend in ways I shouldn't and that can cause vertebral fractures for osteoporotic people (not my current doctors), even at my protests. I did so, because if you don't, think you're considered a noncompliant patient/malingerer. You can't win with some people.

Postsurgery Blogging
The doctors promptly wheeled me off as soon as they injected Versed (I’ve remembered a 10-minute wait with my daughter’s tonsillectomy and my mom’s and others’ surgeries). I have to wonder if word of my Versed disinhibitions had traveled upstairs from the pain management procedure area.

I don’t remember being wheeled off, but I remember some odd snippets in the OR (surgical prep took an hour; the actual surgery started an hour later—they paged my husband). My husband told me postsurgery once that he couldn’t understand what I was saying on anesthesia, so I hope this was the case last week with the doctors, and I hope that some of what I was thinking was not actually being said or was hallucinated, because I’m kind of disturbed by one thing I think I said early on. Why don’t doctors address this concern? At least they didn’t treat me any differently afterward.

I remember being moved sans clothing, which I didn’t like, trying to tell the surgeon about my husband’s upcoming camping trip. I also remember telling the PA about 3 emails I needed to send out and getting no response from him, which frustrated me (I'm sure he had other concerns!). I remember telling the surgeon or a nurse (don’t remember before or after) that I made up something or people think I make up something about illness, then saying I lie when I’m under anesthesia, and that I was normally more…(paused while I searched for word)…sedate (great double meaning, punning while near unconscious). When I was very woozy/in and out, I saying something like that I’d never let Dr. S stick me with needles (insensitive doctor whom I went to years ago for some of these issues), and I remember (or hallucinated?) someone saying something about what I said during a pain management procedure about something I liked and couldn’t figure out why they’d bring that up then. Later I realized I was saying something while crying rather than thinking it (not something I want to share with others; postsurgery, I think). I couldn’t have talked too long since they intubated me (early, I hope).

As with the passing out issues, I’m not fond of the time lapse/incomplete and out-of-order memory phenomenon. It makes me feel like I’ve lost my mind. I’m glad the anesthesiologist told me as much detail as he did since some small part of me remembered that as I was waking up and could make the connections. I’m upset that I was given a morphine pump since the anesthesiologist and I agreed presurgery that he’d do something different, and predictably, I got very ill post-procedure (staying in the recovery area much longer and spending most of the day throwing up). I’m used to throwing up in privacy and got throwing-up constipated (sorry!, needed to throw up and was holding back as much as possible) because the nurses were still standing there, or later, the nurses and my husband. It took me a while to realize they didn’t want to leave me while ill, but how awful, to have to attend an adult being sick like that! I was trying to be quiet in recovery because I heard a man’s voice to my left and realized there must be another patient near me in the recovery area. It would have made me more ill to listen to someone retching. I remember not wanting to be left, though the recovery nurse was in and out a lot, she wasn’t solidly there enough when I was first waking up, at least that was my perception. I felt really afraid then. But mostly people were around and helping. I can't say how much it means just to hold someone's hand when I am feeling that ill and in pain. I'm sure the human connection helps healing.

People kept asking me about my work, which I realize was to test alertness, but really, I did not want to talk about my work. The job is fine, the lack of disability accommodation isn't. There are new tables and chairs not only in an open area, but the adjoining pathways, including in front of the elevator. I hope these aren't permanent, but probably are. They make getting on and off the elevator extraordinarily difficult. And the path isn't going to be clear if someone leaves a chair pulled out. And I can't even turn my head to check for traffic, yet they expect me to park far away in disability inaccessible parking?

I don’t know why the Versed/memory issue bothers me so much, but it does. Glad life seems to be returning back to normal, by degrees. Which do they think is the real Frida, the one who they see on a regular basis, or the one who reveals odd thoughts under anesthesia? I’ve been wanting to blog more but have been short on energy, inexplicably. I’ve had some of the word-finding issues again, which I now think is pain-related since that seems to be the common connection.

Today I was thinking, I really wish for someone to make a meal or two for us since my husband’s getting worn to a frazzle and that means we take shortcuts, eat less healthily. My mom called not 15 minutes later offering to bring over a few meals this weekend! An answer to a prayer not voiced.

Points of gratitude:
-Cards and kind emails from several people, and some goodies from one dear friend (yes, you)
-My sister, rubbing my hair and shoulder when I couldn’t even open my eyes from pain.
-My sister, playing games with my kids to give them something to do, letting my daughter take her last dragon in the Dragonology game.
-My husband washing my hair every day so my psoriasis doesn’t get out of hand, and shaving my legs, and fixing the toes on my compression socks and repositioning me over and over. My sister said she didn't see him sit down hardly at all the entire weekend. When she was helping me or the kids, he was trying to get caught up on laundry (we're going through more towels).
-Being able to take myself to the bathroom now and sometimes reposition myself from sitting to lying down. That’s difficult to do—head heavy!, neck hurts.
-Able to get some work done at home now.
-That I didn’t seriously injure myself last week. My wrist is still green and my hip black and blue.
-My son's teacher read him my father-in-law's email to friends and family right after my surgery was over and that I was doing fine and also an email the next day that I was going home. She must have been checking, because she never reads or responds mid-day. And someone also gave my daughter a note.

Points of irritation:
-My direct supervisor does not like it if I mention a health issue at all; if we pretend that accommodation is needed for other reasons, then he’s okay with it. So I really didn’t know how to tell him I’d be out of commission for a while, even though I had to, since not showing up or doing any work would obviously be a problem. And then he couldn't even say, "Good luck" or "Hope everything goes fine" or anything.
-People expecting an immediate recovery, such as the diagnostician at my son’s school, who wouldn’t get off the phone when we were on the way back to the surgery center (my husband let her know the situation) and who is very terse and nonunderstanding with me. And I quote: “But her surgery was two days ago! I thought she’d be fine by now.”
-That the ADD questionnaire has a lot of overlap with autism (my son’s definitely not hyperactive), so I feel the school will go toward that diagnosis rather than affirming autism. That means we can request an independent evaluation, so I don’t know why I am so worried. Actually, I was recently told they can turn down an independent evaluation request—I thought we were allowed to have one.
-People thinking that the surgery will cure me completely and forever and asking when I'll be completely well and normal. I want to say, "What makes you think I promised that?" Yes, the signs of cord compression are gone, and I hope that as my neck heals I can sit up longer with less pain. But my low back and arthritis issues have been causing me most of the pain! That said, I am going to try one more procedure this summer that I hope will increase my ability to walk and stamina for walking and standing (piriformis injection to paralyze that muscle, since it squeezes tight because of the hip and sacroiliitis and arthritis issues). More money versus more ability, what a decision.

In Other News
The paramedics have asked my mother-in-law how I am. Their memories appear to be intact. Blush.


Elizabeth McClung said...

Passing out is interesting, sorry I suppose I should say horrid and scary if that was how you felt but you don't discribe it that way more like puzzled.

So: High resting heart rate - Do you have a pressure cuff and have you checked it those times you feel dizzy? Sorry, this isn't a "you should have done this thing" - I am thinking that either fluxuations in BP or a prolonged kick up of the heart rate could cause dizzy and pass out/near passout phenomenon.

Also heat, are you perspiring the correct amount (a lot of people overheat at concerts) - not about hydration but core temp.

And of course pain, acute pain or continuous pain can often manifest itself in different ways like for example, feeling nausious (I have this with certain back pain), up to feeling faint and having a passing out - sort of a neural overload going "Hey, you aren't paying attention to me!"

Change in breathing patter and or the PH balance in your blood - strangely, if you process TOO much oxygen, even unintentionally, you get a tingling effect, dizziness, fainting and then continue into hands going into spasm and staying there, etc. Putting on oxygen, makes it worse! The PH balance of the blood is off and the effects continue until balanced. In my early days (like last year) I carried around a paper bag AND oxygen because I couldn't tell because I was getting no or mixed signal whether I was overoxygenating or under. (looking at your fingernails is a easy check, pink is good, purple not good).

Hmmmm, also it is possible to push yourself physically beyond your limit, which results in your body deciding to withdrawn certain functions, equilibrium is often the first to go, then sometimes eyesight. If there was humidity, this is even more common (take a look at marathons and Iron Man finishers, the ones who can't see, and can't tell which way is up and pass out as soon as they stop focusing).

Gee, that was a lot of information but was any of it useful. I guess I am hoping you can identify a marker of pass out and then know when the "red zone" is being approached. I will ask some EMT's I know too if you want (nice ones). Becuase while I understand completely doing what you want and having fun and then paying for it - but I always find it comforting afterward to figure out exactly what I can do next time to STRETCH it out longer if I need to (yeah, that's what we're supposed to figure out, how to delay passing out instead of avoiding it!)

FridaWrites said...

Thank you so much, Elizabeth--this information is truly helpful. The first time I was too short on air and then amnesiac for long enough that I didn't feel scared, and the second time, I didn't feel fear once my husband switched seats with my kid and was watching me to keep my head from hitting concrete if needed. I do feel nervous something could happen by myself, really not good if I'm walking instead of wheeling.

I do have a pressure cuff, and often when I feel dizzy, the BP is on the low end (lower # under 60); it went to 80/40 or 90/40 in the surgery center overnight. BP and blood pressure were back to normal when paramedics checked. Prolonged high heart rate I'm used to (months at at time with pregancies or illness), but sometimes I've had very rapid heart rates (like fluttering of hummingbird wings rather than actual beating) that I've not ever been able to catch on an event monitor; often this is preceded by my heart feeling like it stops completely for 10-15 seconds then restarts. So it may be something there. I didn't feel the pain/awareness of it stopping this time, but it felt like it wasn't beating the first time. Unfortunately if you can't catch it on the 30 day event monitor, you're screwed/it doesn't happen in the eyes of the doctors. But when it happens, it's what sets off the high rate for many weeks.

The atenolol I take for high heart rate may be driving my blood pressure too low. Since spinal compression can result in some autonomic nerve problems, I am wondering if the decompression just changed things up for me and my body's trying to readjust. Heart problems are related to my bone disorder and family history--I'm not worried about MSA.

I do seem to be sweating okay, but my neck and half the back of my head don't get any air, so that could be a problem. It's easier to overheat faster (I felt very ill very fast when our air conditioning went out). I tend to be very hot natured but didn't feel overly warm the first time, and the second time, only right before the dizziness. Both times I wanted to lie down.

It could be that in excitement/enjoyment at the concert that I was tuning out pain signals, which I can do for the short term.

Great idea with checking fingernails for color.

Right now I'm just not finding much commonality between the 2 episodes--and that's maybe good since it helps exclude a lot quickly (such as not wearing the neck brace the first time, not taking muscle relaxer the second time, etc.).

Sure, ask Cheryl or someone. I definitely want to figure out what my triggers are. It's way better to be forewarned and know when I'm approaching my limits or prevent this entirely.

Elizabeth McClung said...

If your diastolic is under 50 (the lower number) - that is the pressure in your veins when at rest, which means TOO LOW - seriously, 50 is too low, 40 means that if your heart stops for any time pushing out high enough systolic (the higher number which is the pressure when the heart pumps) - think of it like pumbling, you have a HIGH diastolic, like 150 which I get it means the veins are VERY SMALL and the pressure is huge and that is why I get little blood bubble and bleeds (like a pipe leaking under huge pressure) which cause the TIA's. You on the other hand, are the person who flushes the toilet and the water just sort of limply flows in at a very slow level. So, if you are right and you have periods where your systolic drops becuase of heart erratics, that could contribute. I will share all this will Maggie and Cheryl and see what they thing, and what affect the heat would have on such a low BP. Also what you could tell for a warning sign.

FridaWrites said...

Yes, I set a new at-home record for myself last night--110/53. Although not under 50, since my lower number never gets under 70 and since my blood pressure is almost always at 120 or 125 over 70 or 80, this sudden change could be more than I could handle. That low pressure is with skipping the atenolol last night--I take 1 or 2 a day, depending on heart symptoms, cut back to 1 a day as heartbeat has not been up as much.

D Phoenix said...

Wow, you guys deal with some complicated stuff, what with the blood pressure, heart rates being whacked and the paramedics and all. I'm glad the blog world has brought you together so you (and Maggie and Cheryl) can exchange info. I haven't anything useful to say beyond the recognition that you are so beautifully tenacious (if that makes any sense to you) and I admire that.

FridaWrites said...

It makes sense, though I hadn't thought of myself that way--thanks so much. Just hoping the new issue gets resolved soon.