Tuesday, July 31, 2012

FINALLY! ANSWERS! (and more)

So yeah, had a pacemaker check, electrophysiologist & cardiologist today.
next 2 pacemaker checks are oct 30th & january...4th? lol I forget.

also, epic, EPIC news.
for 7 years I've had a "mystery" heart issue that doctors couldnt quite figure out that has kept me from exerting much energy. my mom & I had begun to accept that this was as good as it was going to get. but guess what. THEY FINALLY FOUND IT!
along with the Afib which we already knew I had, the also found PVC (Premature ventricular contraction) (also know as Premature Ventricular Complex or Premature Ventricular Beat)
and to make things better. It can most likely be treated!
I start medication tomorrow, at a small dose 4xs a day. With a follow up appointment September 5th. If I'm responding well to the meds they will increase the dose until I get stabilized.
I was so excited. I cried. I can't believe they finally found it!
it was such great timing too, since I brought my cardiologist a present today, and today, she deserved it 100 times over! I freakin love her <3

Cardiac love:
Also on a side note, one of my best friends, Ann, who I have known for 7-8yrs is finally coming up from Virginia to visit. She is a heart patient as well, my #1 CHD sister! I'm going to be a brides maid in her wedding and this is the first time we're meeting in person. its true love right here.

I didn't really get any good news as far as anxiety. It has been really bad lately but I can only take low dose Ativan. Unfortunately due to all my heart issues, I can't take anything else. not happy about that, but ya win some ya lose some I guess...

I also got the clear from the cardiologist to take birth control, as long as its estrogen only. Gyno is hoping this will ease my back pain. which would be totally awesome. She did find some other abnormalities, so I'll see her again in a month. *Fingers Crossed*

Tuesday, July 17, 2012

Health. Stress. Chaos.

I wasn't really sure where to mention this but basically the entire remainder of the month of July is all doctor appointments. *le sigh*

As many of you know, I got my new pacemaker last week. that in itself was a fiasco. but I'm not going to post the whole thing here, its on my caringbridge anyway.

So yeah, I've been dealing with a ton of stress lately.

Trying to get all this disability/legal crap taken care of & being broke all the time doesn't help.

But this is basically what's going on on the health front:
I had a bit of a traumatic event happen this past week that I really have only talked with my mom about. Every time I so much think about it I start crying.
There are also a few anniversaries of friends passing. which happens often. as well as it being Cindy's birthday a month from today. My anxiety level has been through the roof, I'm constantly shaking & sweating. 

now moving on. 

like I said, I had my surgery last week (1 week ago tomorrow). I had my heart set on this new pacemaker taking care of all my problems and making me feel almost "normal" again. I know that was a stupid way to think about it, because realistically I know that A-fib & my pacemaker stuff aren't really related.
so yeah, I got the new pacemaker. and the next day was great, I went up the stairs twice in a row...just for fun. and because I could. unfortunately that was short lived and I'm back to not being able to much at all. During the last few weeks with the old pacemaker, the pacemaker was on "safe mode" (safe mode is explained in my previous blog). so for the most part I was pretty stationary. In a wheelchair, dropped off by buildings so I wouldn't have to walk, even a shower chair. What I'm getting at is a didn't really exert myself enough to cause many episodes of A-fib. That's a good thing, right? NO. it's not. during that time I was on a 30 day heart monitor to monitor the frequency of my A-fib episodes, but due to the fact that I wasn't triggering many, I obviously didn't get many recorded. Thus having it during that time was somewhat pointless. I'll probably end up needing to do it again. not that it matters. but I would have liked to have at least part of my summer to enjoy and not worry about trying not to kill myself.
so yeah back to the whole "thinking the pacemaker would fix everything" part of this. I did. and it was stupid of me. because while my heart rate can actually keep up with me if I do something like go up the stairs (meaning I can put forth bursts of energy when needed) but overall, I still have no energy. extended walking still exhausts me. and I'm just tired all the time. (what's worse is, having insomnia, I cant sleep at night. ever.)

so I see both the electrophysiologist (pacemaker doctor) & my cardiologist on the 31st for some follow ups. and also to find out if I need another heart monitor or if she got enough info from the last one. I'm hoping she did because I would now like to find out what my treatment options are. I know there are some medications. most of which I need to be off mood stabilizers in order to take (which sucks, but its the lesser of the 2 evils I guess). I will also need to be admitted to start these meds because they need to watch how my body, with all its issues, will react to the new meds. Then we need to HOPE that medication will help, because in some cases, it doesn't. I'm not sure I'm ready for some of the alternative treatments. At least not yet.
So I'm just really hoping meds will fix it. because if not, I'm facing either painful treatment or living with it. neither choice will be very easy for me.

Now. moving on.
While I usually don't consider a dentist appointment to be a very big deal, due to my current stress level and the fact that the dental situation I'm in now could have been prevented if my former dentist knew what the fuck he was doing. all in all I have 8 cavities. and they can't use the usual numbing medications on me due to my heart problems. so yeah. it is incredibly, incredibly unpleasant. I had 5 of them filled today, which was....ugh. the poor woman felt so bad because she knew she was hurting me. (which obviously wasn't her fault).
I also saw the Oral Surgeon today. He did some xrays and told me that I certainly need my wisdom teeth taken out, to which I replied "I could have told you that". anyway, the bottom ones are impacted. top ones are not, however they're growing sideways because they cant fit in my mouth.
here is the funny part. his original plan was to do the removal with just a numbing medication. after explaining all that to my mom he turns to me and goes "assuming that's okay with you?" and I was like "uhhh. NO! not at all!" so he now needs clearance from my cardiologist to put me under (which won't be a problem) so that part is taken care of. I just found it humorous that he thought I was going to be okay with that.

Finally, as most of you know. I suffer from ABSURD amounts of back pain. almost constantly. if you're a doctor and are currently thinking of the question that always comes next: "Where would you say you're at on a scale of 1-10 with 1 being the lowest?" my answer would be "somewhere between 6-9" because while it is always there, I'm not always in tears over it. on average I'd say 7ish. but it gets worse at night (part of the reason I don't sleep)

you have been warned!
I will tell you when its safe to read again.

I'm going to see a Gyn for the first time ever on thursday, as I'm about 85% sure my back pain is related to my girly parts. there a few reasons why. I've had this problem for years but as I've gotten older, its gotten worse. by like....A FUCK TON. lol. It gets even worse for the weeks or so before I get my period. Then it seems to stop during the 3 days that I'm bleeding most heavily. Then it comes back full force the last day of my period and continues on all month, increasing again before my next period. and the cycle continues.
My moms is thinking I have a tilted uterus or there is a swelling problem. I'm not really sure because I really don't know anything about Gynecology. like I said, I've never been to one. I do know, that I've never been able to insert a tampon properly. I have used them for the past....4-5 years or so. but I've never been able to bend, sit, or move too much while wearing one. I just recently (like 2 months ago) figured out how to get it in so it doesn't hurt, and that works maybe 70% of the time.
My concern is that she will tell me it's something that she can't do anything about. I will honestly lose it. because I can't take it anymore. You may think I'm exaggerating but anyone who has spent extended periods of time with me can tell you how much pain I'm in.


Again, you may think I'm exaggerating but anyone who has spent extended periods of time with me can tell you how much pain I'm in. 

There are a few things I am able to do to lessen the pain, but none of it lasts very long.
heating pads work if the pain isn't absurd. stretching helps for about 20mins or so, then the pain comes back. walking helps while I'm doing it. but once I stop the pain comes back. sleeping on hard, flat surfaces help for a day or so but after that, it doesn't matter where I lay down. I will sill be in pain. Massage helps but again, it lasts for maybe a day at best. And in case you forgot, I'm broke and can't afford to keep getting massages.
Tylenol & Advil don't do jack shit. I have a prescription muscle relaxer which doesn't do much at all. and I have a prescription for oxycodone. which does work. but I really don't want to be relying on that. I take less than I'm supposed to because I'm afraid of getting addicted to it. and my doctor is reluctant to give it to me, for the same reason.

So in the event that this new doctor I'm going to see tells me she can't do anything, I'm going to try acupuncture, which I'm wanted to try for a long time. and if that doesn't work I'll go see a pain management specialist. and lets hope that works.
because if not, then I'm out of ideas and out of hope.