Saturday, October 6, 2012

Dorothy got it right: There's no place like home.

Long week.

Got part of a toenail removed at the end of last week. Learned that Marcaine works far better than Lidocaine for me. And the toe is healing nicely. No more ingrowns to deal with.

Tuesday had pain management. Talked a few different options. He's ordering a compounded cream for pain. He also ordered PT. I'll call them on Monday to schedule my first session.

After pain management, admission to the hospital for cardiac med changes. I stopped the Lopressor and had to be monitored to start the Sotalol. IV therapy started my IV - I was very dehydrated. And I managed to give myself an anxiety attack with my first dose of Sotalol. Which I thought might happen. So I took Klonapin and managed to relax. And Dr. B ordered Lactated Ringers (1L )for me. Bless him. Had a 3 hour bolus and was finished around 2 am. And I finally stopped peeing every 5 minutes. I love what IV fluids does for the body.

Still had some anxiety the next day. Megan was with me though and we spent time walking around and talking and watching movies. That really helped. Sotalol went better that day, but in the afternoon I started seeing spots and then my heart started to bother me. A couple hours later when the nurse came in, same thing; I saw weird colors and my heart started to bother me. I was in a-fib during that. I had been having A-fib and a few PACs here and there and sinus arrhythmia, which I'd been having pretty much constantly anyway. Had a-fib one more time while I was sleeping as well.

Thursday was better because I knew I was going home. Still had some anxiety and spent the morning in bed, but the afternoon was better. I was discharged around 2230, but hey, got to sleep in my own bed!

I had 6 doses of Sotalol, 7 EKGs, a couple rounds of blood work, several doses of anxiety meds, and a bunch of awesome nurses (and one I didn't care for as much ) and finally something that seems to be working for me.

It'll be a couple months before we decided if the meds are working how we want or not, but I do feel different already. I even stood in the kitchen and baked cookies and threw some veggies in the oven. Hopefully the med will keep working and suppress the sinus arrhythmia more. It's doing a great job on the a-fib so far. I've felt it a little last night and this morning, but still much less than before.

Here's to hoping we find a solution that gets me my life back!

Wednesday, September 19, 2012

Sad. Confused. Frustrated.

No matter how hard I work at making myself healthier, it seems something else is always coming up. But I try. I have to keep trying. And I work hard to be ahead of the game. Obviously, a sore joint isn't going to have me jumping up to see the doctor anymore. But with the heart issues going on, with neuro issues, with digestive issues....that's important stuff. Stuff that has to be taken care of. I am the best I can...I hate that I see my doctors more than my family and friends, but if I don't take care of myself, it won't even matter if I can see my family and friends because I'll be too sick to know or care (or worse, dead).

That's why it sickens me so much when someone who is otherwise healthy, but has a small problem come up, doesn't address it. Doesn't address that their body needs maintenance like their car. That their body is the only one they get. That there are things that doctors can't miraculously fix. But they can prevent a problem if you give them the chance.

I was chatting with a friend last night, and the conversation was disheartening. After knowing me so long and hearing about the hell of being sick, I thought something would have stuck. Clearly I was wrong.

friend 10:39 pm
    I need to go put some stuff out on the curb for a pick up tomorrow
    Be back shortly

 me 10:39 pm
party hard

friend is available 11:00 pm
 friend 11:01 pm
    Someone tell my heart it doesn't have to hurt just because I'm carrying loads of stuff. : p

 me 11:02 pm
that's not good.

 friend 11:02 pm
    Nope. It quit when I quit
    But it was not nice

 me 11:02 pm
have you had chest pain before?

 friend 11:03 pm
    Yeah. It's fairly common for me. If I lay on the wrong side. It felt just like that

 me 11:03 pm
um, not good

 friend 11:04 pm
    Not so much

 me 11:04 pm
ever mention it to a doctor?

 friend 11:04 pm
    I think I mentioned to that one doc.

 me 11:04 pm

 friend 11:04 pm
    "Come back after you've had sex."

 me 11:05 pm
what does that have to do with anything?!?!?!

 me 11:06 pm
it's your heart! if you're having chest pain, you're having chest pain.

 friend  11:06 pm
    I told you about this doc. I had 2-3 problems, she blew past them and told me to come back after I'd had sex. Like, she'll do a female physical after that, but until then whatev

 me 11:07 pm
ugh. yeah, see another doc.
chest pain isnt normal. ever.

 friend  11:08 pm
    It matches my personality. :P

 me 11:09 pm
for real, no joking around with something like that. if i had some kind of warning about stuff that was going to go haywire in my heart, i would have loved the chance to investigate sooner. because you only get one heart....and if that goes bad, doesn't matter what shape everything else is in

 friend  11:10 pm

 me 11:12 pm
seriously, just don't take your health for granted. it's so much cheaper and easier to deal with preventitive care than deal with a problem later

 friend  11:12 pm
    Maybe she figured because it usually just happens when I lay on one side for too long (or lean to one side carrying stuff) that it was a movement thing, not a heart thing. idk
    But I should probably see what other docs they have there

 me 11:13 pm
did she bother doing any tests to confirm that? because that doesn't sound like good health care at all...i'd really see another doc if i were you

 friend  11:14 pm
    No, no tests. She spent five minutes with me

 me 11:15 pm
please please please see another doctor
it is just not worth the potential problems later

 friend  11:16 pm
    This is true.

 me 11:19 pm
i know i sound like a nag...but consider the situation i'm in....i was thinking earlier how much i'd be willing to give to get back a sense of normalcy that didn't revolve around health problems and especially he heart issues of the last year (last 4 years, but it got worse this year)
if you have the chance to fix it, take it

 friend  11:19 pm
    No, I know you're not just saying this for the heck of it or whatnot. You're our resident medical expert for more than one reason. ;)

 me 11:19 pm
whether i like it or not

 friend  11:19 pm
    Your advice is valued and appreicated

 me 11:22 pm
i just wish people could spend a day in my shoes (or anybody with a chronic problem like this)....there's no reason to be a worry wart or see the doctor for every scratch and bruise, but sometimes, it's just really important to be proactive

 friend  11:23 pm
    That's true.

 friend  11:37 pm
    Sheldon (TBBT) is so funny

 me 11:38 pm
haha yep! we got the rerun of The Adhesive Duck Deficiency tonight :-D

 friend  11:38 pm
    I am watching it now.
    The slip in the tub, I presume?

 me 11:38 pm
yes :-)

 friend  11:38 pm
    And the grannies cookies

 me 11:38 pm
one of my favorites...i love the giggle factor of penny and sheldon ever interacting

 friend  11:39 pm
    Yes. And her fashion worries

 me11:41 pm
lol hey, regardless of how crappy i feel, i usually make an effort to look like i didn't just roll out of my laundry basket before i go to the hospital

 friend  11:41 pm
    It's just funny in the show

 me 11:41 pm
then again, usually my feeling crappy is at least mentally changed by looking like i tried

 friend  11:47 pm

 friend  11:58 pm
    I tried to get an iTunes uk account yesterday

 me 11:59 pm
how'd that work out for ya :-P

 friend  12:00 am
    Well, y'have to have a payment option (of the UK variety) for it to work, so I tried to gift a iTunes UK card to my UK yahoo email. But one has to speak to the international gifting department to gift one thusly.
    They're open midnight - 11 a.m.
    So if I want to do this, I have to call some time

 me 12:01 am
why do you have a UK yahoo email? and is this show worth so much trouble to try to get it just 6 months early?

 friend  12:02 am
    Because I wanted a UK iTunes account
    So I need a UK login
    I wanted to buy Downton Abbey, S3
    Which is airing in the UK and won't air here until January

 me 12:04 am
yeah i remember you telling me that it was airing there, but still....
a few more months and you can just watch it :-P

 friend  12:04 am
    You don't understand the situation. a) this is DOWNTON FREAKIN' ABBEY... :D and b) Tumblr is posting gifs
    If I wait 4 months, there will be no surprises.
    They'll have a long lost sister married off and I'll know the names of all her future kids before I see it. :p (not an actual plotline that I know of)

 me 12:11 am
Okay, I might be really pissing you off when i say this, and please don't get me wrong, that's not my goal here, but i get that it's a possible side effect. Why can you put so much passion into a tv show and try moving heaven and earth to get it now, but seemed to not have any drive or passion toward chest pain? I mean, the same amount of work online could find you a few competent doctors in your area and let you research them to see what their patients have to say about them, and then make an appointment to see one.

 friend  12:11 am

 me 12:12 am
I just...believe me, I love fandom and all that (and it gets me through the day sometimes when i can't even manage to hold a book in front of my face), but....i don't see how that can have so much importance compared to your health

 friend  12:13 am
    a) doctors cost more money b) I don't believe anything's seriously wrong, since it's been going on for years. It happens every few months, when I move wrong.    People act consistent with their beliefs, regardless of the veracity thereof. I believe the show will be more fun if I watch it now. I don't feel greatly at risk with the pain in my chest/ribs

 friend  12:15 am
    Mostly the money

 me 12:18 am
i realize hindsight tends to be 20/20 and we're a civilization that lives in today, but the cost of preventative care is ALWAYS cheaper than fixing a problem.

 me 12:20 am
to see a family practice doc and specialist after that to get tests done would cost under $1000 out of pocket with no insurance. The cost of my last two minimally invasive surgeries were over $14k each. The cost of my last 3 day/2 night hospitalization was about the same.
And with the affordable care act, a general practitioner visit is free once a year.

 friend  12:23 am
    This is true.

 me 12:26 am
Or think about what you would do if the car started making a funky noise or smoking. Would you just wait it out and see if it hung in there, or would you have someone take a peek under the hood to make sure that at the very least, there weren't major issues, at least until you could get it to a mechanic next month?

 friend  12:27 am
    I would peak. Thus the trip to the doc. Who dismissed it. And I mentioned it to you once before and you offered alternate reasonable explanations and so I gave it little more thought
    I can do strenuous exercise without pain, making me think it's just a matter of moving wrong

 me 12:31 am
okay, but think of that doc as a mechanic who can't keep the rain from falling into his shop, let alone fix a car. The title doesn't necessarily mean anything if they're not willing to put in some work. And I am sorry that I don't remember talking about it before, and while I like to be able to offer a few explanations for things that happen in the human body, it doesn't mean the easiest one is right. And if we're having this conversation for a second time (again, sorry. I believe you, I just don't remember....crappy side effect of too many meds), it means it's gone on for a while, which is another good indicator that it needs to be checked out.

 friend  12:32 am
    (Lol. I know you and your meds)

 me 12:33 am
Before I had surgery earlier this year, I had SVT for about 4 years. And I could still work, exercise, drink alcohol, eat junk food all without feeling it at only happened sometimes. Until it was happening a lot. Until I almost passed out at work once and had to be rushed to the ER. Until it was progressing to the point that it could have caused anything from a heart attack to death.

 friend  12:36 am
    I will try to remember to see what the options are within our group

 me 12:41 am
A sore joint for a year, while not exactly healthy to the rest of the body, could be brushed off as something that was more inconsequential and could wait. Chest pain means there's something wrong in/on/around/near your much more vital parts....and those aren't parts that can be fixed or replaced. I mean, seriously, I've had heart surgery twice in my life and am now looking at the possibility of more surgery, or a pacemaker, or worse, being stuck with no solutions and having to live with it the rest of my life. You better believe me when I say I'm doing whatever I can to try to get it under control now while I have a better chance of it. There is nothing in the world right now that's worth the money more than that (and even worse, worth other people's I can't work now and can't make my own money). Even if you just look up a primary physician who seems more attentive and does an EKG or CT scan, that would be better than nothing.

 friend  12:42 am
    That seems like a wise plan

 me 12:43 am
Anywho, I'm gonna go to bed. I'm in pain and should have gone a while ago. I don't need to be sitting here anymore. I'll talk to you tomorrow night.

 friend  12:43 am
    ::hugs:: Feel better soon
    And thank you for caring
    Love ya!

 me 12:43 am
Love you too. Night.

 friend  12:43 am

Tuesday, September 4, 2012

More trying to remember my brain

The last two weeks definitely haven't been fun. The beta blocker made my blood pressure so low that I've been groggy and low functioning and dizziness has been worse. But on the positive, I do see that it has helped with the palpitations.

For whatever reason, my body isn't reacting the same to the meds as of yesterday. My blood pressure has been higher, the palpitations have been more frequent and stronger. My heart rate has increased a bit since yesterday, but it's still within good range (it's been mostly under 80). I'm not sure why the change...but it's happened. And it's annoying. My chest hurt last night, my left arm was aching, I was anxious, I just felt horrible. Turning on my left side helped, and being far on my side or stomach is always more comfortable when I'm anxious or my heart is racing.

I have my tilt table test and cardiac MRI on Friday. My mom and stepdad are coming into town for that. Though we won't actually know anything that day. I did just call and make an appointment to see the cardiologist the following Friday. I know he would call me if there was a problem, but I would rather just have the appointment already set so we can go over results and talk future plans for management of symptoms.

I also see my GP tomorrow, which is great, because I feel like there's a lot to catch up on. I really wish there was a way to use email to communicate with doctors. Even if it was pay per message or something (because doctors should be paid for whatever services they provide), I think it would really help a lot of people.

I've been off work for two weeks and I know the next paychecks are going to hurt. I don't know what to do about that though. I've called Legal Services of MO for the second time, and I'm hoping someone will call me back soon to talk about benefits and services that I qualify for. I am ready to quit my job....I just want to focus on me. My job is hurting me and I just can't take it anymore. I want to be able to rest and take care of myself.

And of course, to top it all off, I'm definitely allergic to bananas now. My mouth and throat feel all puffy and dry and irritated. No more bananas for me.

Friday, August 24, 2012

Blarg. I need an "easy" button.

Went to see my family for a couple days earlier this week. Got my second round of SI steroid injections so I was stiff and sore and ouchy the first night. The second day there was less pressure in my hips so it hurt a bit less, but I still needed some rest time in the afternoon.

I got a phone call while I was resting and was told by the cardiologist's medical assistant that the physician had gone over my EKG strips from the event monitor and wanted to start me on medications and order another test right away.

He wanted me to start on Lopressor and full strength aspirin. And a cardiac MRI, in addition to the tilt table test already ordered. So, needless to say, I was upset. I feel like every time I get ahead of something, something else comes up. And when my heart is involved, it gets scary. So I cried and freaked out.

Then they called back to confirm that my tests would both be on the same day to save me some trouble, which is very nice of them. And I had asked the nurse if she could find out anything more specific about what was going on and why the sudden changes.

She said I have some kind of arrhythmia in addition to the tachycardia. They don't really know what it is yet. It seems that my heart is still pumping just fine, so that's good. But the arrhythmia is currently unknown. The nurse did mention that a-fib was a possibility, which had crossed my mind, and I really didn't want to think about it. But now I'm thinking about it.

Since my first heart surgery was in the atria and because I've had a second surgery on nerves, it's very plausible that I've developed a-fib.

I honestly don't know what I'll do next if that's really the case. I can't have the ablation surgery again....too risky. But I don't think a pacer would be any better.

I'm on the Lopressor to help lower my heart rate in an effort to make me a bit more comfortable. It may help with the arrhythmia some as well. And the aspirin would have to be to prevent clots and minimize inflammation around my heart for the time being in case there's a problem.

The MRI is to look for scar tissue and see what's going on in there that we haven't seen yet. I imagine the focus will be on my previous surgery since that was pretty big.

All in all, I'm stressed, and trying hard not to be, but I'm human and this is scary. But I'm dealing...I'll take the meds. My mom and possibly stepdad are coming to be with me for my tests in a couple weeks. For now, just counting down the days until I know more.