HAWMC Challenge Day 8.
Best Conversation I Had This Week:
Since I don't get too many conversations about my health other than "Are you OK?" (like yesterday I was at the baseball field with K and J for 6.5 hours, R asked if I was OK or needed drinks since it was so hot), my best conversation was about crunchy/attachment parenting. I know most people who blog about health try to be limited in what the share about their kids but my blog is MOMMY with Dysautonomia.
Anyway. I'm more of what you would call a "crunchy" mom. I breastfeed/extended nurse, bed share, baby wear, non-cry-it-out (CIO), anti-circ, against abortion, I'd LOVE a water birth, if I ever have more it'll be pain med free. AND here soon, we'll be cloth diapering! There are others who are MORE crunchy (extended rear facing, non-vaccinating, all-green, etc). I catch some flack for it from people but I don't care. It makes me mad when it happens but they should know by now it never changes my mind. I'm lucky that R is pretty open minded about my views and agrees. I wanted to cloth diaper for a while but didn't have the necessary funds at the time. So I dropped it. 1 diaper can cost as much or more than a pack of "sposies" (disposable diapers). But after you have a suitable stash. No more buying diapers (unless you want more).
Anyway, R thought they were the plain diapers from before that needed the diaper pins. I showed him pictures and he agreed with me! So probably sometime this month I'll be ordering the supplies to cloth diaper!
Sunday, April 8, 2012
Saturday, April 7, 2012
HAWMC #7 (My #1)
HAWMC Challenge Day 7. Today is writers choice and I chose to do a day I didn't complete since I just started today.
Why do I write about my health?
I guess I write for a few reasons. To keep track of stuff. Eventually maybe I'll be able to help others like me. There is so LITTLE information about neurocardiogenic syncope it's laughable. Only I'm not laughing. Maybe I'm not looking in the right place but if there are more than the handful I've found, someone point me in the right direction. It's not very informative now but maybe one day.
I also find writing cathartic. I don't write everything but writing helps. I can't do much but even with minor brain fog I can still write. I may ramble occasionally but it helps. I'm the type that brushes stuff under the rug until it comes bubbling out.
Maybe one day I'll even share this blog with my friends and family. Right now they know even less than me. Some by choice. Maybe one day they'll get it.
Why do I write about my health?
I guess I write for a few reasons. To keep track of stuff. Eventually maybe I'll be able to help others like me. There is so LITTLE information about neurocardiogenic syncope it's laughable. Only I'm not laughing. Maybe I'm not looking in the right place but if there are more than the handful I've found, someone point me in the right direction. It's not very informative now but maybe one day.
I also find writing cathartic. I don't write everything but writing helps. I can't do much but even with minor brain fog I can still write. I may ramble occasionally but it helps. I'm the type that brushes stuff under the rug until it comes bubbling out.
Maybe one day I'll even share this blog with my friends and family. Right now they know even less than me. Some by choice. Maybe one day they'll get it.
Feeling Blue
I haven't felt well lately. Nothing new there. I'm getting tired of fighting and especially of getting no where. I'm tired of feeling like no one cares. R told me yesterday "I care, I just don't show it." I fail to see how that helps me. I suffer alone. Sure he brings me food occasionally and helps with the big 2 and occasionally J but it's not enough. When I'm in pain I get no help except "take something" or "stop breastfeeding and get on your meds". When I'm depressed or anxious, I get nothing. When I need someone, he isn't there. It's been like that so I've pretty much stopped telling him a lot. I feel like I have no one fully. I suppose I should just take what I can get but it hurts. When I'm feeling down or anxious all I want is to be held. I want sympathy. I want understanding. Even if he can't do anything, just having warm strong arms wrapped around me and some sympathy and love would go a long way. My diagnosis is recent despite suffering for 13 years and maybe he is in denial. I don't know. I just wish he could understand. I may be grown up but I still need his help. And not just with the physical stuff that I can't do. I don't know what to do. He already feels like he does too much. I know I can't do this without his help but I need more. I just don't know.
It's a bad week. Bad everything. Depression and anxiety. Dizziness. Plain headaches. Migraines. Pain. Nausea. Stress. Just everything. What can I do.
It's a bad week. Bad everything. Depression and anxiety. Dizziness. Plain headaches. Migraines. Pain. Nausea. Stress. Just everything. What can I do.
Thursday, April 5, 2012
Unexplainable Pain
I'm not sure what is going on but I'm in so much pain it isn't even funny. I haven't done anything to be in pain. My head hurts, I'm nauseated, my lower back is hurting bad as well as both legs. Pretty much everything hurts to at least a minor degree but those are in constant pain. Has been almost all day. And I got dizzy earlier. The only thing I did was eat a bowl of cereal and drink milk. Had to lay down, pain started less than 2 hours after that.
I haven't taken anything because my only options are tylenol or ibuprofen (both the OTC kind) and those just don't feel like it'd help. But this pain and nausea is driving me crazy!
I haven't taken anything because my only options are tylenol or ibuprofen (both the OTC kind) and those just don't feel like it'd help. But this pain and nausea is driving me crazy!
Wednesday, April 4, 2012
Sleep Study rambles
So I can go ahead and add sleep study to tests taken. It was scheduled for the 28th but I got a call yesterday saying they'd had a cancellation and did I want to go ahead and do it. I went ahead and agreed. Didn't think much past an initial hesitation and said yes. If I'd thought it out I'd have freaked out and if I waited till my scheduled appointment I'd have been a bundle of nerves. I was already panicky because I'd only had 3 hours of sleep and couldn't take a nap or have any caffeine. Granted I think I've only had 2 sodas so far this month (not counting the 5 sprites - those are "no caffeine"). To top it off, I got ill (yuck) and had to lay down after to settle my stomach. Torture!
I was also nervous because R had to work today and I was panicky thinking about J who still wakes up to nurse at night. But she did fine though she stayed up till 1. I woke up at one as well. Maybe our bodies knew.
Anyway, I got there and shown to a room which, in my opinion was somewhat better than a hotel room. Hotel beds are very hard (at least the ones I've tried). This one was soft, big enough for 2, and just comfy. It also had a desk and chair, plush leather seat that rocked, I didn't try it so I don't know if it reclined. And a TV. It had medical stuff too and a camera which was bothersome. I don't like attention. I layed on the bed watching tv while the other girl got hooked up. Then it was my turn. So. Many. Wires. I felt like a robot. Anyway. I tried laying on my back but that wasn't going to happen so I layed on my left side. I woke up a few times and about midway through, switched sides. I also woke up before he came to wake me up. Got unhooked and showered. He showed me my "activity". I did have some apnea spells but it was less than 5 per hour (for 10 seconds). I had some REM sleep so I AM getting SOME deep sleep but he said something about the 3rd stage and my brain being active a lot. I won't know anything else until the doctor reviews it. Or my appointment at the end of the month. But I figured I'd write it down. I've eaten, nursed J and my back hurts so I'm laying back down.
I was also nervous because R had to work today and I was panicky thinking about J who still wakes up to nurse at night. But she did fine though she stayed up till 1. I woke up at one as well. Maybe our bodies knew.
Anyway, I got there and shown to a room which, in my opinion was somewhat better than a hotel room. Hotel beds are very hard (at least the ones I've tried). This one was soft, big enough for 2, and just comfy. It also had a desk and chair, plush leather seat that rocked, I didn't try it so I don't know if it reclined. And a TV. It had medical stuff too and a camera which was bothersome. I don't like attention. I layed on the bed watching tv while the other girl got hooked up. Then it was my turn. So. Many. Wires. I felt like a robot. Anyway. I tried laying on my back but that wasn't going to happen so I layed on my left side. I woke up a few times and about midway through, switched sides. I also woke up before he came to wake me up. Got unhooked and showered. He showed me my "activity". I did have some apnea spells but it was less than 5 per hour (for 10 seconds). I had some REM sleep so I AM getting SOME deep sleep but he said something about the 3rd stage and my brain being active a lot. I won't know anything else until the doctor reviews it. Or my appointment at the end of the month. But I figured I'd write it down. I've eaten, nursed J and my back hurts so I'm laying back down.
Tuesday, April 3, 2012
On staying positive and baby steps
Time sure flies sometimes. I can't believe it's spring break. I'm a little happier today, I got some fluffy mail yesterday (in parenting it means things like wraps for babywearing, cloth diapers etc). I finally have a pink wrap. I've got 2 blue (not the same hue) ring slings (one being a woven wrap conversion and another a linen one) plus a blue woven wrap. I didn't get an expensive wrap since we have other monetary needs but I HAD to have a pink one. I have 3 daughters and all blue wraps! Granted the only one I wear is J but still. Maybe I can get D to sit in a wrap or a rs. I have 2 more I want to buy for me (and I'm trying to convince R to let me get him a blue one like my pink one). The one I got was a gauze wrap. I love it. One of the others I want is pinkish purple and another is blue, I want to get the blue one and turn it into a mei tai. My woven wrap is kind of small on me so I can only do a few carries and they aren't very reinforced, the one I've got now, despite not being woven feels pretty darn secure but I want the other one too. And I realllllly want a wcmt. Custom slots are soo hard to score though, and it's so expensive! Maybe my Christmas present? I don't know.
Babywearing makes my life easier. J likes being held and after having miscarriages plus anxiety and everything else, I've probably spoiled her a little. She's definitely a mommy's girl. But even R has trouble carrying her long periods. Constant weight wears you out, but with babywearing, I can be hands free to do what I can/need to, and J is weightless even after 30-60 minutes. I can barely feel any strain.
And lets face it, people with Dysautonomia can get pretty weak/tired. Wrapping her up puts almost no strain on me if I've wrapped her right. And baby cuddles can cure almost any sadness, at least momentarily. I'm glad I had kids before I found out what I have. Sure I need help from R but my kids give me so much happiness even in the darkness I feel. It's easy to just waste away when you have no one rooting for you and cheering you on. My kids are my cheerleaders. Any time I want to give up and stop trying to get answers or want to just lay in bed for a year, I push myself harder for them. I can't chase them around, I can barely chase ME around, which is another reason I'm thankful for R. He's athletic and strong. He can shoulder it. He can get outside and play ball or tag while I watch from the sidelines. When I lag behind he can keep up with them with no difficulties. I wish I had the energy to chase them too but at least I have R to do what I can't.
I'm also glad I went ahead and had kids early because who knows if I'd have been able to have my ideal family later on. Would I even have a diagnosis? My last 2 OB/GYNs were the ones who sent me to the cardiologist. Sure I have syncope spells and palps and tachycardia NOT pregnant, but it's so much WORSE when I AM pregnant. It goes back to my normal after I deliver so who can say if I'd have ever found an answer. If not, by the time I did find someone to help, would I be much worse? If I did find an answer pre-kids, I'd have to stop the meds he plans to put me on. They can't be taken while pregnant or nursing. Who knows how that would've affected my decision on when to have kids or how many. Even now I don't feel DONE. Oh I'm most definitely done for NOW but only by necessity. If we had the room for 4 kids, if I felt like we could financially afford to add another, and if my health weren't an issue, I'd be ok adding another. But not just yet. I'm happy cuddling with J and baby fever is low. Just a minor pang as opposed to an all out ache. I don't know if we'll ever have another. I'd have to be off meds for a long time. It took me 12 and 13 months to conceive D and J (I conceived month 12 when trying to get pregnant with J but lost the babe). S was only 6 months of not trying. so roughly a year to get pregnant, 9 months carrying and 2 years nursing. I couldn't do that right now even if I did have room and finances to comfortably fit another child. My health is just too poor.
I just don't feel done. Not totally, at least not in the long run. But I AM content for now. Just like little J. I'll take baby steps. I'm focusing on them. And my health. S is already in school, D will be in pre-k soon, J still has a while. But that gives me time to get on the right track, at least try. And to enjoy them while they're little. In 4 years when J is old enough for pre-k, S will be 10. That's just mind boggling. In 4 years all my kids will be in school full time. Maybe I'll have energy then? At least a little. I'm not asking to run a marathon but maybe by then I won't have to spend 80-90% sitting without being dizzy.
I have to hope. And take baby steps.
Babywearing makes my life easier. J likes being held and after having miscarriages plus anxiety and everything else, I've probably spoiled her a little. She's definitely a mommy's girl. But even R has trouble carrying her long periods. Constant weight wears you out, but with babywearing, I can be hands free to do what I can/need to, and J is weightless even after 30-60 minutes. I can barely feel any strain.
And lets face it, people with Dysautonomia can get pretty weak/tired. Wrapping her up puts almost no strain on me if I've wrapped her right. And baby cuddles can cure almost any sadness, at least momentarily. I'm glad I had kids before I found out what I have. Sure I need help from R but my kids give me so much happiness even in the darkness I feel. It's easy to just waste away when you have no one rooting for you and cheering you on. My kids are my cheerleaders. Any time I want to give up and stop trying to get answers or want to just lay in bed for a year, I push myself harder for them. I can't chase them around, I can barely chase ME around, which is another reason I'm thankful for R. He's athletic and strong. He can shoulder it. He can get outside and play ball or tag while I watch from the sidelines. When I lag behind he can keep up with them with no difficulties. I wish I had the energy to chase them too but at least I have R to do what I can't.
I'm also glad I went ahead and had kids early because who knows if I'd have been able to have my ideal family later on. Would I even have a diagnosis? My last 2 OB/GYNs were the ones who sent me to the cardiologist. Sure I have syncope spells and palps and tachycardia NOT pregnant, but it's so much WORSE when I AM pregnant. It goes back to my normal after I deliver so who can say if I'd have ever found an answer. If not, by the time I did find someone to help, would I be much worse? If I did find an answer pre-kids, I'd have to stop the meds he plans to put me on. They can't be taken while pregnant or nursing. Who knows how that would've affected my decision on when to have kids or how many. Even now I don't feel DONE. Oh I'm most definitely done for NOW but only by necessity. If we had the room for 4 kids, if I felt like we could financially afford to add another, and if my health weren't an issue, I'd be ok adding another. But not just yet. I'm happy cuddling with J and baby fever is low. Just a minor pang as opposed to an all out ache. I don't know if we'll ever have another. I'd have to be off meds for a long time. It took me 12 and 13 months to conceive D and J (I conceived month 12 when trying to get pregnant with J but lost the babe). S was only 6 months of not trying. so roughly a year to get pregnant, 9 months carrying and 2 years nursing. I couldn't do that right now even if I did have room and finances to comfortably fit another child. My health is just too poor.
I just don't feel done. Not totally, at least not in the long run. But I AM content for now. Just like little J. I'll take baby steps. I'm focusing on them. And my health. S is already in school, D will be in pre-k soon, J still has a while. But that gives me time to get on the right track, at least try. And to enjoy them while they're little. In 4 years when J is old enough for pre-k, S will be 10. That's just mind boggling. In 4 years all my kids will be in school full time. Maybe I'll have energy then? At least a little. I'm not asking to run a marathon but maybe by then I won't have to spend 80-90% sitting without being dizzy.
I have to hope. And take baby steps.
Sunday, April 1, 2012
Lab work and confusion
So I'm not sure what's up with the last sentence of the previous post. I don't know if there were more words or if I just left off punctuation or if the post was too long or what. I don't remember. Oh well it appears complete. Mostly. From what I remember.
About 2.5 hours after I write it a killer migraine hit. 9:30 AM my time (remember I can't fix the time zone setting from my phone so it's off by 2 hours). Tried to sleep it off, kind of worked. Kind of being the key statement. I didn't get rid of it until about 4 AM the following day (yesterday) after I caved and took tylenol (I do not like taking meds, even tylenol) because the pain was horrible. And to make matters worse, J refuses to sleep. It's no fun suffering through a migraine and entertain an infant, let me tell you. Then by a combo of help from R and her finally sleeping, I slept over 11 hours. Still woke up tired. That's one reason I want the sleep study. No matter how much or how little I sleep, I either wake up tired or get tired again within a few hours. But ironically, I ALSO have insomnia so even if I'm tired, I just lay here.
Side note, got my blood work back yesterday. All normal. Not surprising. Dr. R irritated me a little with that. She asked how long this has been going on. I'm, since as far back as I can remember, I've had blood work since it started. If my blood work or systems were the cause that she were testing for and were normal then despite me having insomnia since a teen (at least), you'd think it'd have been abnormal then. She said my old results don't count. Sure it doesn't tell you what's happening NOW, but the problems didn't START now. It's on going. Of course she KIND OF intimidates me when she does that so I didn't think that, I just felt stupid. (See why she's not exactly my favorite....) Also, I pulled the paperwork I got out and I'm not sure why, but I know I said she wanted me back in 3 months? Either I didn't hear the receptionist correctly or she scheduled me wrong. See it was pretty confusing, I didn't know she was wanting a follow up (which may be a DUH moment but whatever). I talked to her and she said she'd schedule the sleep study and she wanted blood work. Sleep study paper handed to me along with check out paper. Got to the window, receptionist mentioned wanting me seen again and I THOUGHT she said 3 months. The date didn't register because she didn't mention the blood work and my mind strayed to that (she has a phlebotomist in office which I didn't know unlike my cardiologist but my cardiologist is in my main hospital so I was unsure what the mix up was and brought it up). Turns out, my sleep study is scheduled for a saturday, my follow up for the following monday. I have no clue why since everything I've read says it could take weeks to get the result back.
I'm also unsure of what will happen at my coming cardiology appointment. Dr. M is waiting till at least August to start me on meds (since I'm nursing) so unless Dr. K decides on more tests, what on earth can I expect? And if he doesn't voluntarily offer tests, what could I ask for. Or should I. I know I need to mention the 3 things Dr. T said he discussed but didn't (diet/weight/exercise/test result) but what else. If I didn't have that to discuss and got there for a "How is everything? Fine? Ok see you in 3 months." I'll explode. Seriously. My first ever cardiology appointment with him, I waited HOURS in the waiting room. Pfft. I got seen fairly quickly by Dr. T though so I don't know.
About 2.5 hours after I write it a killer migraine hit. 9:30 AM my time (remember I can't fix the time zone setting from my phone so it's off by 2 hours). Tried to sleep it off, kind of worked. Kind of being the key statement. I didn't get rid of it until about 4 AM the following day (yesterday) after I caved and took tylenol (I do not like taking meds, even tylenol) because the pain was horrible. And to make matters worse, J refuses to sleep. It's no fun suffering through a migraine and entertain an infant, let me tell you. Then by a combo of help from R and her finally sleeping, I slept over 11 hours. Still woke up tired. That's one reason I want the sleep study. No matter how much or how little I sleep, I either wake up tired or get tired again within a few hours. But ironically, I ALSO have insomnia so even if I'm tired, I just lay here.
Side note, got my blood work back yesterday. All normal. Not surprising. Dr. R irritated me a little with that. She asked how long this has been going on. I'm, since as far back as I can remember, I've had blood work since it started. If my blood work or systems were the cause that she were testing for and were normal then despite me having insomnia since a teen (at least), you'd think it'd have been abnormal then. She said my old results don't count. Sure it doesn't tell you what's happening NOW, but the problems didn't START now. It's on going. Of course she KIND OF intimidates me when she does that so I didn't think that, I just felt stupid. (See why she's not exactly my favorite....) Also, I pulled the paperwork I got out and I'm not sure why, but I know I said she wanted me back in 3 months? Either I didn't hear the receptionist correctly or she scheduled me wrong. See it was pretty confusing, I didn't know she was wanting a follow up (which may be a DUH moment but whatever). I talked to her and she said she'd schedule the sleep study and she wanted blood work. Sleep study paper handed to me along with check out paper. Got to the window, receptionist mentioned wanting me seen again and I THOUGHT she said 3 months. The date didn't register because she didn't mention the blood work and my mind strayed to that (she has a phlebotomist in office which I didn't know unlike my cardiologist but my cardiologist is in my main hospital so I was unsure what the mix up was and brought it up). Turns out, my sleep study is scheduled for a saturday, my follow up for the following monday. I have no clue why since everything I've read says it could take weeks to get the result back.
I'm also unsure of what will happen at my coming cardiology appointment. Dr. M is waiting till at least August to start me on meds (since I'm nursing) so unless Dr. K decides on more tests, what on earth can I expect? And if he doesn't voluntarily offer tests, what could I ask for. Or should I. I know I need to mention the 3 things Dr. T said he discussed but didn't (diet/weight/exercise/test result) but what else. If I didn't have that to discuss and got there for a "How is everything? Fine? Ok see you in 3 months." I'll explode. Seriously. My first ever cardiology appointment with him, I waited HOURS in the waiting room. Pfft. I got seen fairly quickly by Dr. T though so I don't know.
Subscribe to:
Posts (Atom)