Sunday, October 6, 2013

Down the Rabbit Hole Again

Well it's that time again - Surgery Time! Oh, boy oh boy.

So this will be a quick update because I need to be in bed asleep in about oh two hours ago. I have to check in at 4:45am. A.M.

You guys. That is my bed time.

My surgery is scheduled at 7:30 and I am just ugh. Yeah. 

So I am winding down now.

I don't even know what the hell to write anymore, to be honest. 

I don't like surgery.

Not even a little bit.

It's a necessary part of my life, however, especially when it is maintenance shit. That part I am OK with. It's the fracking recovery time that just makes me want to punch everyone.

And after not one but two reschedules I just want to get this shit over with.

Stay tuned. 

Thursday, September 19, 2013

Impending Surgery

My surgery is scheduled for Oct. 1st, which is in roughly 12 days time. I'd have scheduled it soon, but I really wanted to make my Seattle trip. I'm not just visiting friends but also attending a food bloggers conference. I flew in yesterday and felt totally plagued - and of course I forgot all of my anti-plague wards so I had to drop nearly $30 at the homeopathic store and down nasty ass propolis. 

My tummy is aching from emergen-C and I am tired as fuck, but I am feeling a bit better. Today is the last sunny day I'll have before a down pour, but I decided to be an adult and spend it indoors at my friends house to rest up and reserve my energy for the conference itself. I am thankful my room situation sorted itself out most favorably and I won't have to keep trekking back and forth as I initially planned. While this trip is all about friends, food and fun I am also being extra mindful about my energy level and just taking it easy.

Night time is the worst because my heart rate picks up a bit, especially when laying down, so I have to find that perfect position which will enable me to sleep. Funky beats and rhythm is to be expected, but so long as I can keep anything truly emergency room worthy from happening, all the better. 

I have to be honest and say I am very relieved this surgery is happening and rather quickly after my return at that. My heart makes sleeping, breathing, and let's just say it, living my life really uncomfortable right now. A new pacemaker means renewed energy, something of which I am desperately short in.



Tuesday, September 10, 2013

Tick, Tick, Tick BOOM!

I start every morning off reading another chapter in a book of a series I am revisiting. It is one of my favorite series - The Nightrunner Series - by Lynn Flewelling. I am not a reader of fantasy, but Lynn is just that good of a fucking writer. The last book of The Nightrunner Series is due out next April and in anticipation of crying myself to sleep every night after I conclude the adventures of characters I love more than some of the real flesh and blood people in my life, I am rereading all of the books. Just so the wound will sting all the more.

I began Monday morning with my new ritual, and while I was lounging quietly in bed a sudden sensation overcame me. Internally. It was as if someone had dimmed the lights inside of my body, with the main switch being my heart. A sneaky suspicion overtook me, and after I concluded that chapter (come on now, I wasn't dying) I stuck the marker in my book and went to submit a transmission of a pacemaker report.

Within an hour, I received a phone call and my suspicion was confirmed: My pacemaker had fallen back on its reserve energy power. It's time to schedule the surgery to replace the battery. Not normally that big of a deal as far as procedures go, but this one is for me. To slightly paraphrase myself from an earlier post:

See, the issue is recovery and how long it is going to take my body to do so. Everyone, myself above all else, is biting their nails about this relatively simple procedure because of the nature of my history and anatomy. My pacemaker is located in my left abdomen, in a pocket under muscle, and the procedure will require the surgeon to reopen the latter part of my open heart scar - which is not something I desire. Given my history with fluid retention at the slightest provocation, everyone is anticipating that I am going to run into a similar issue that I found myself dealing with shortly after the last procedure in 11/2011. Now, I wasn't on the mega high dose of diuretics last time as I am now. So this may very well tip the scales in the favor of a speedier recovery.  

I'm not holding my breath for a speedy recovery, to be honest. I am anticipating the long road filled with weekly trips to the gastrointestinal doctor, another abdominal tap or two and just a lot of frustration and being run ragged again. 

Annoying still, my life has to be put on hold in a way I was not prepared for. As my battery crapped out earlier than I was expecting it to, I have to cancel a heap of plans I'd made for October - including a trip to Seattle and two fun food related events I was invited to as media. I have to put my dating life on hold. My friendships. My main blog will suffer. I've just reconnected with my dad, whose own health is on a constant roller coaster. All of this has to go on the back burner again, and it fucking sucks. I'm not saying this stuff is more important than my health, because it isn't, but it is still irritating.

Some days I wonder why I can't just go out and get a job like a normal person.
Some days I wonder why I can't just hold down a job, any job, and collect a paycheck and live on my own and pay rent and live the life that most of the population in the western world leads.


Then one morning while casually reading in bed a piece of machinery I need to function suddenly needs a battery via surgical intervention and I have to hit the pause button once more, and say to myself, "Oh yeah. This is why I can't have nice things."




Thursday, August 22, 2013

An email to the Past

I am preparing for my 13th session of Camp ~ 13 sessions in 10 years. Oy that's a lot. 

This year is Superheroes and I am unfortunately too piss poor to go all out with costumes and decorations. In my heart, though, I know I am the biggest geek counselor there. I just know someone is going to throw down with me and I'm gonna have to school them some Batman. 

Anyway. Today I found the email address of my childhood cardiologist. Well, one of them. The best one. The cardiologist whom which I hold all other cardiologists against. He set the standard, and he set that bar very high. So high I did not think anyone would ever be able to reach it. 

But someone did.

After switching cardiologists a few years ago, I have not felt as confident or trusting since Dr. S - the childhood cardiologist. Dr. J, my current cardiologist, has finally allowed me to sit back and breathe a sigh of relief nearly twenty years in the making. Dr. J meets that high standard of which I hold all cardiologists - the bar that so many failed to grasp throughout my adolescence and young adulthood. He grabbed the bar, did a triple backflip and landed with a half-twist and a high-five. All while snapping a selfie to post on Facebook.

Back to the email. 

I shared the thoughts I'd been carrying in my heart for two decades; how much love and respect I developed in my heart, all those years that Dr. S was tinkering with it. How I learned to ask questions and communicate efficiently with my medical team. I told him what he meant to me - his impact on my life, that it went beyond the simplification of "you saved my life" although that is true, but obvious.


I was overcome with my emotion as I typed that email, and tears blurred my vision. Though these were words I wanted to say to his face, I had missed my opportunity to do so last October and am unsure if our paths will have the chance to cross again. 

Due to complications of my hypothyroid, I have short term memory issues and cannot recall if I had, in actuality, emailed him before now. I may come off as a lunatic if I had, but the saving grace of deja vu is that at least he knows for sure. Plus, blogging about this milestone now will ensure I need not second guess myself later.

Memory lapse aside, I hope Dr. S receives my email (for the first time) and that it brings a smile and maybe a chuckle to his face. Contacting him after all of these years gives me a sense of closure and peace. 

TEAM RACHAEL! and I are going to be together for a very long time (sorry, guys, you're stuck with me) and Dr. J, not ten years my senior, is going to give that first battle cry against any complications that attempt to besiege my good health from here on out. 

Dr. S gave me more than life - he gave me the love and respect to handle my life. To settle for nothing but the best care, to ask questions, to be involved. To participate in life. My life.

Thanks, Doc.



Monday, June 17, 2013

Sunday Video Confessional: Fatigue on a Friday

Another video blog - a day later than I meant to get out. Oh well! You'll forgive me.




 

Sunday, June 9, 2013

Sunday Confessional: Video Rant the First

So I filmed this a couple of days ago and uploaded it. Consider this an experiment of the vlogging kind. Yes, I am extra incoherent rambly because I was really tired and got sidetracked on what I really wanted to rant about. I'll save it for another day.

If you actually enjoyed this, tell me in the comments and feel free to make suggestions on topics to rant about. Lord knows there are a mega shit ton.
Anywho. Enjoy.


Thursday, May 30, 2013

Care Overkill and Super Meltdown

Yesterday, on my mother's birthday no less, I blew a gasget. I'd reached my Medical Bullshit Threshold. Let me back pedal.

So, I was hospitalized in April. Thought it was a GI issue, so I went to Santa Monica UCLA where Dr. GI is located. Turned out to be a ruptured cyst with internal bleeding due to blood thinners, so I was transfered to Westwood UCLA. Spent a total of 5 days there.

Had a bit of excess grossness with my GI area, so I went back to my GI. He prescribed some medicine which I am still on, recommended a buddy of his we'll call Dr. 2nd Opinion. I really had no interest in switching doctors, but I thought it was pretty nifty Dr. GI could be humble enough to say, 'This guy is AWESOME-SAUCE in the area you're having issues with, go see him. He's better than me.' 
So I switched out my follow-up with him to an appointment with Dr. 2nd Opinion, which was this Tuesday.

First. Sigh.
OK, as well-meaning as residents are, 99% of them are dumb as bricks when it comes to doctor-patient relations. Like, they never take the five seconds it would cost them to apply a brain-to-mouth filter on the words flying out of their mouths and how said words might affect the patient. They're so fucking eager to come off as REAL doctors that they think they're being impressive by shooting off their mouths before they have the facts.

Here's my case in point:

Eager Resident to Dr. 2nd Opinion is a nice girl - oh, they're all nice 'cause if they're assholes, I can at least tell them off - but she started asking me about liver transplants and used scary words like cirrhosis and congestive failure. 

I told her my liver does NOT have cirrhosis, despite what others assume, because I had a biopsy not one year ago that showed no signs of massive scarring or cirrhosis. She left to confer with Dr. 2nd Opinion and brought back my notes from the biopsy I referenced. Guess what? Cirrhosis-free. So then she told me - get this - that techs will see fluid in tests and just assume it's cirrhosis and write that down in their notes. Which is why I have a mega shit ton of references to cirrhosis in my notes.
Assume.
They assume.
ASSUME?
What. a fucking. liberty.


My brain nearly oozed out of my ears and onto the floor with that revelation, but oops, it was finally time for my actual appointment with the actual doctor - an hour behind, thank you very much. So he comes in - along with this Mystery Hottie Whitecoat who doesn't bother to introduce himself, just hangs back. So I am getting examined by the Dr., Eager Resident and then Mystery Hottie Whitecoat suddenly jumps in - and I stick out my hand and say, "AND YOU ARE?"


Dude. Seriously. What. The. Fuck. I'm a fucking person. Don't put your goddamn hands on me without my consent.

The only person on this planet who gets to touch me without proper introductions is Ben Whishaw, and since I'm about 98% certain he's as gay as the day is long, that ain't gonna happen anytime soon. 


Then Dr. 2nd Opinion springs a SURPRISE! in-clinic mini ultrasound test on me. OK. Was not prepared for that. Oh, but he wants a proper ultrasound on my liver, spleen and doppler done. The kind where I have to fast for 8 hours, make a real appointment at my medical facility of choice - oh, and don't forget the follow up appointment I need to make with him to discuss the results. 


I made these appointments, but come on. Come on. What the fuck? I've had these tests done. They've been done. They're done. Just. Accept it all, dudebro. Confer with notes (which are clearly never read). I questioned him and the necessity of this test, but he said something something lesion on liver something something just make sure. Like, what about picking up a phone and conferring with the rest of TEAM RACHAEL! to make sure the lesion isn't there? Well. Whatever. So I got some blood drawn, made the follow-up appointment and faxed the order for the ultrasound. MORE days to come out to the West side. Jooooooy.

Then. Yesterday happened. 

So, in light of the cyst debacle, I'd been taken off my blood thinner. It was comical that the idiots in the Coumadin Clinic at UCLA rang me up to harass me for getting my INR check when it happened the first time around. It was a simple explanation on my part, a grumble at improper notes by the lady who called, and a laugh we shared. Good times.

Then yesterday I get another call. From an irate bitch at the Coumadin Clinic. Telling me my INR was low. Are. You. Fucking. Kidding. Me. I explained to her what had happened - and this woman had the audacity to INTERROGATE me about the authenticity of my story.
It went something like this:


Me: I'm not on coumadin anymore. I had a cyst rupture, I was bleeding internally and I was hospitalized for like five days.

Her: When?

Me: This was last month, April. Over a month ago.

Her: Well, which physcian took you off?!

Me: To be honest, all of them, but Dr. A sanctioned it.

Her: Well, which hospital did you go to?

Me: UCLA. I started at Santa Monica, but I was there for 24 hours before being transferred to Westwood.

Her: *huffing and puffing, running out of steam* Well why didn't they put it in the notes!

Me: I was called by the clinic about three weeks ago and we had this exact conversation, so I don't know why it isn't there. It should be.

Her: *fussing and grumbling AT ME* Blah blah bitch bitch....(pause) (mumbles) Oh, there it is. Stopped coumadin April 12th.


Me: Justified.


What the HELL is with people not bothering to read the mother fucking notes? Did these people just coast through school on memory alone? It's like their professors said, "Hey, class, since I am SO awesome, I am going to give you an open book and open notes test!"
And these people just kick back, all cocky like and say, "Nope. Don't need 'em."
And FAIL.

After that I tried unsuccessfully to schedule my ultrasound on a day when I'd be down in the area anyway so I wouldn't have to waste another day there. I looked at my calendar and realized I would be down at UCLA 3 times over a 7 day period. Nope, nope, nope. I hit my threshold and lost my shit.


I got authorization to cancel one appointment (a follow up with the Lady Doctor) but I put TEAM RACHAEL! on the case of this test, asked them to dig around in notes and tell me if this shit is necessary or just some doctor feeding his own ego.


People wonder why I can't have a life. This.
This is why I can't have a life.





Thursday, April 25, 2013

The power of free food and booze compels me!

My stomach was healing well last week. I had a few off days, Thursday in particular, but I chocked it up to walking a lot the day before and perhaps pushing myself too far too soon. However, I've grown steadily worse, or worse-ish and nothing seems to be working out for me. It's not pain, per say - just discomfort. Constant discomfort in my lower abdomen. The left side in particular hurts more, a certain area being hard as a rock. I'm unsure what the hell is going on, but I do know one thing: I'll be damned if I am going to miss another function over this bullshit.

It's not so bad that I need to race to the ER again, so I'll tide myself over the weekend and give him a ring on Monday.

The discomfort is hindering my ability to eat properly and get shit accomplished. Everything takes double the amount of time it ought to, and I have a serious work-related deadline. I wanted so very badly to have a guest blog done in time for a friend who went through a major surgery and I haven't even been able to finish that :( It makes me feel like a failure when I can't deliver on something I had ages to get done.

Anyway. I want these stomach issues resolved. Summer is nearly here and I'd like to make some plans - be it traveling or earning some cash to travel. Let's all hope for the best.

Sunday, April 21, 2013

Why I Have Been Quiet

Hello.
Yes, atrocious upkeep. My apologies. I always mean to get back to this blog, but something always holds me back. Whether it is forgetfulness (a good 40% of why I do not post), laziness (I'd say another 40%), or fearfulness (the remaining 20%), there really is no good excuse.

The fearfulness may come as a shock to some of you, perhaps. I do hold quite the illusion of being incomparable to the perils of fear and insecurities when it comes to discussing my health. Truthfully, the visit to Philadelphia and my tour of the Children's Hospital of Philly (not coincidentally when this blog fell silent) really shook me up. I have made several attempts to adequately describe what went on, and how I felt, but all of them have fell rather flat. I might make one more attempt. I hope - for the sake of the lovely PR woman who organized that whole thing for me - that I pull through.

The fear that holds me back from updating this blog so often, and being so open, is that I will share too much of myself with the world. Telling you about my health is not always telling you about me. In fact, it most assuredly is not telling you about me much at all. I put on a very good show for everyone, get a few laughs hopefully, and move on. Take a bow. A few air kisses. Applause, applause. The end.

You don't see me. It's all a slight of hand. Or words, rather.

Anyway, I will give you the most recent update:

I am at a junction in life right now and I am trying to decide which path to travel down.

The first is Responsibility: To forgo any travel plans and have my pacemaker surgery, thus giving up the next three months to recovery time.

The second is Travel: I recently found out that I may travel up to 60 days out of the country. Why I was not told this originally, and why I was too lazy/scared to find out this info last year is not something I want to dwell on; what matters is I can go, I want to go and I want to be out of here as often and as long as money will permit. I had planned on going to a couple of countries - through helpx.net - and the one family I was very much hoping to stay with never replied. Sadness. I lost a bit of momentum for my sojourn, but I still would like to go.

So the question is: Do I go and have another adventure, or do I stay and be responsible? Get my pacemaker changed so I do not have to worry about it crapping out on me in another country; or go now while I have a good chunk of time? I am also a Maid of Honor for a wedding next August; I feel if I postpone my trip until next year, I will be putting my friend through some stress she ought not to go through alone as I am one of the key planners.

There are many Pros and Cons for either decision, and with a recent bout in the hospital I am finding especially pressed for an end to this. TEAM RACHAEL! has given me the all-clear to travel, and they are leaving the ultimate choice to me.

On one hand, I feel patience is a virtue and more money and energy will be accumulated for a trip in 2014. On the other hand, I am weary of being home, and I feel I should seize any opportunity that comes my way.





Monday, February 4, 2013

You Are Full of the Disappoint!

So I have big plans for this year. Big plans. Enormous plans. Plans that will theoretically take me out of the country for months at a time. However, I need to get my pacemaker battery switched out. As of December, its life expectancy is "3-18 months" which is a fucking joke of a range considering how much can happen in that amount of time. 

What people seem to fail to realize - from both the Professional Patient and the Totally Ignorant People - is that my life has to come to complete halt when shit like this pops up. But putting my life on hold for "3 to 18 months" just doesn't fly with me. I have plans. I want to make good on those plans. But I don't want to be caught in another country when my pacemaker decides to say "fuck it, I'm out." I want this to not be a concern of mine. I want to be able to get on a plane and just go.

Why didn't my electro-physiologist just advise me to get this done straightaway? I would have had this shit scheduled the first week of January and dollars to donuts I wouldn't be sitting here at 10:00pm on a Monday angrier than I've been in a long time. No. He just shrugs and tells me something like "I'd take the gamble." I listen because 

1) I respect the man's opinion
2) Let's be real; I am not happy about going through another goddamn surgery

I think #2 is just the reason why a casual attitude has been put on up until now, though. Everybody is terrified of what my body is going to do once it gets knifed up again. After discussing the matter with a friend, though, I realized what a damn moron I am being and I need to schedule this event right away and just get it the hell over with. But I needed to plan a trip for March or February. So that shaves another 10 days off of my ever ticking calendar and by the time the ball gets rolling the frothing harpy who guards the scheduling book is just unrelenting in every way imaginable. The earliest date to get this show on the road? February 25th.

The date I need to get on a plane? March 14th.

I'm livid. I'm livid at everyone involved, myself included of course.

I am just at a total loss of where to go and what to do. Do I cancel my first trip? Do I postpone the surgery until late March, giving me just barely over a month to recover before the big trip? Do I risk postponing it until I have a few months between traveling?
I don't know. I just don't know. 

See, the issue is recovery and how long it is going to take my body to do so. Everyone, myself above all else, is biting their nails about this relatively simple procedure because of the nature of my history and anatomy. My pacemaker is located in my left abdomen, in a pocket under muscle, and the procedure will require the surgeon to reopen the latter part of my open heart scar - which is not something I desire. I'd rather have a brand new lateral scar, to be honest, but I told him go with whatever is easiest. Given my history with fluid retention at the slightest provocation, everyone is anticipating that I am going to run into a similar issue that I found myself dealing with shortly after the last procedure in 11/2011. Now, I wasn't on the mega high dose of diuretics last time as I am now. So this may very well tip the scales in the favor of a speedier recovery. 

Who knows. (The Shadow knows!) It's a gamble. It did not help that I thought the consultation I went to on Friday was going to be super casual and the surgeon ended up triggering me (unintentionally, of course) into some heavy PTSD feels. I was really one step away from breathing into a paper bag. He didn't intend to, obviously, but he didn't want to give me any illusions as to what to expect, worst case scenario. He didn't want to sugarcoat it as a simple Duracell battery switch out - which is, to be honest, what I thought it was going to be.

I don't know. Right now I can't make any hard core decisions until I talk to TEAM RACHAEL! and hear what they say. I'm a grown-ass woman, I make my own mind up obviously, but their input is valued above all else.

I just really wish people had been upfront and honest with me from the very get-go of what this procedure entails. It would have saved me a lot of time and grief and I'd have made sure to set aside the necessary time to heal properly. I cannot continuously put my life on hold for bullshit caused by miscommunication and people in my life who flat out refuse to communicate honestly and effectively with me.



Wednesday, January 2, 2013

A Bright and Shiny New Year

Time for another Patients for a Moment blog carnival! Amy from Diabetes Mine asks:

" ...in honor of the kickoff of 2013, we’ve chosen the topic of Renewals — not just prescription renewals, but any ways in which you may be starting fresh for the new year. Changing doctors? Meds? Exercise routine? Committing yourself to relaxation techniques? Drinking less coffee? Leaf turnovers? Do-overs? Making resolutions, you might say."
 
Nowhere on the Internet did I write a retrospective of 2012, as it was one of the most trying years of my life. At times, 2012 was insufferable; and then, from time to time, ineffable. All of it is too close to my heart for share-and-tell, but I will use this month's Patients for a Moment blog carnival to talk about the future I am looking toward.

I don't necessarily believe in resolutions, although there are goals I would like to meet. Among them:

1) Fitness routine to get into shape. 

2) Figuring out what precisely the rules about traveling and retaining my insurance are.

3) Making it to the Continent of Europe (I already have a rough idea)

4)  Earning more money for writing, be it through Glass of Win or freelance projects.

5) Here:


Always and forever.


What do you have in store for 2013?