Mental Struggles

Some days are just - hard.

Today is one of those days, and it's not even so much about me and my predictament (although that, and a lack of sleep due to that, are NOT helping), but more about "life" in general.

I got news over the weekend that I was the person chosen for the private room/suite I had looked at last week, and while that was great news, it also involves a fair bit of stress. First off, I've got to come up with the money for a deposit and move....until I have that approval, I'm stuck in a waiting zone. Due to still playing catch up from the divorce (and not always making the "wisest" financial choices) I'm worried about getting approved for the loan I requested. Yes, I requested a little more than I think I'll need, and I do have collateral in the form of my motorcycle, but it's not promised. I'm not worried about the payments since my new rent will be saving me about $300/month, but I still need that approval!

So there's that stress, PLUS the stress of looking at trying to move in the next month. Additionally, I've still got my trip to Italy to plan for and looming about the time I'd be fully moved (if that happens). Add in the stress of my own issues and the whole leg mess.

And to top it off, today Nicky Hayden #69, an American motorcycle rider passed from injuries sustained in a bicycle accident. Not racing, not doing anything crazy, just riding his bicycle on a road.

Life is so short. We are never promised tomorrow, we have no guarantees of next week. Not everyone enjoys "dangerous" things, but I think things like this hit home with use who do even more. We are in a sport where things like a boring 6mph crash can have devastating consequences, but life still has a way of trumping even that. I think people find it easy to ignore this possibility. When we "live dangerously" we know we are taking risks. We are aware that life is fragile. But seeing how fragile it is even when not doing "dangerous" things tends to hit a little deeper, especially when that person was so well liked and admired.

I'm finding that his death is hitting me harder than I imagined it would. I think a big part of it is because of how he was injured. When someone is injured or dies while racing, it's tragic to be sure, but we know it can happen. Something like this, however, just slaps you across the face with how things can be taken away in a moment.

All of this combined is making it difficult for me to process right now....

Early Thoughts on the PICC line Life

I'm about 48 hours into this. A few thoughts at these early stages:

First off, it definitely hurt more than I thought it would, but seems to be abating quickly enough. Didn't really bother me last night at all, and while I did taken an ibuprofen here at work, overall definite improvement.

Secondly, doing my research ahead of time and having things at home and ready for this has been HUGE. I felt prepared, and I was prepared. It's made the transition to this new "life" a tad bit easier. Having the sleeve covers is great, having all my supplies there makes it a million times easier. Far less stress.

Third, this is VERY TIME CONSUMING. They say 30 minutes to infuse - that's a best case scenario, and even with taking things out of the fridge well in advance, most of the time it's more like 40 minutes. Plus prep, flush, flush again, heparin, clean up, it's a solid hour every single time. Granted, at work and in the mornings I go and do other stuff while it's infusing, but that's still a hunk of time. Definitely something you need to plan for if you're going to be doing something where active infusion would be difficult.

Fourth, it's a royal PITA. Twice a day wouldn't be anywhere near as bad, but having to do it 3x a day at 8 hour intervals makes it a LOT more complicated.

Lastly, at this point, it's not seeming too intrusive, BUT, it's also a bit early to tell. Probably too soon to make any judgement calls on side effects or other issues. At this point I'm still paranoid so being extra careful about cleanliness and such - not sure that after several weeks of this that the paranoia will still be as strong. .

Already tired of it. A couple weeks I feel like I could suck it up and deal with it, but god damn, 6 weeks of this is feeling like an eternity right now...

Let the Saga Begin

Just got home from getting the PICC installed and my first infusion.

Getting it put in was pretty much what I expected based off of other people's stories and what I had read. That didn't make me any less nervous about the entire idea of this entire process. The nurse there, to her credit, did her best to try to calm my worst fears....didn't help much, but she tried.

My arm hurt(s) quite a bit after the fact though. She commented several times on how tough my skin and vessels were, not sure if that's part of it, but even after taking 800mg of ibuprofen I'm still feeling it (that did take the worst of the pain off though).

The infusion and teaching process was kind of what I expected after reading about that as well (found a great little guide online from a family that had to deal with one for their daughter who had cancer). Of course, they go over all the possible side effects and issues, and by the time you leave, your fairly convinced you're about to die.

They have me on cefepime, which supposedly does remarkably well against the enterobacter bacteria, so fits with the research I've done as well (for some reason reading scientific articles about these things I find helpful - plus it helps me know what questions to ask).

So now on to the saga of every 8 hours, for 30-40 minutes, I have to hook myself up to this little ball of antibiotics and "infuse." Mostly, this sucks. This means I do not get a full night's sleep for the next 6 weeks, no matter what. That alone probably means no real working out since I'm going to be trying for naps as best as I can, or having to wake myself up after being asleep for an hour. It means carrying drugs and cleaning supplies with me to work every single day, and then dealing with at least one infusion during my work day.

So there are 126 opportunities for me to screw something up. I go in weekly for dressing changes/check ups, and med pick ups. The bags full of supplies that you get is ridiculous....literally a medium size garbage bag worth. For one week. F.M.L.

Supposedly you can do things while infusing, moving around and such won't bother anything, but you still have this tube and little balloon thing you're toting around...ugh.

Emotionally I'm kind of a disaster. Between the fears of something going wrong, or having a bad side effect, or another infection, or the infection we're trying to treat causing even more problems (let's face it, at this point possible amputation isn't off the table yet as a viable option if this goes south); plus the inconvenience of  dealing with these drugs; plus trying to live my life around yet another problem; and finally just the time involved. I'm so beat down emotionally I don't even know how to react anymore. Tears, or sheer morbid indifference seem to be the extremes I'm settling in. Now we'll add a lack of sleep to the mix - fuck, I don't want to be around me.

Which leads to the final issue of the simple fact that I'm pulling away from people. I'm not capable of giving a flying fuck about how good things are for them or how "bad" their problems are - unless their problems are truly bad (like, way worse than mine) in which case I'm that much more sympathetic.

All said and done, I get the impression this is exactly what I was expecting - a royal PITA that has the capability to make your life a living nightmare - more so than it already is. And it hurts more than they say - the numbing helped but it did NOT take care of all of the pain, and my arm fucking hurts right now.

Tomorrow

Tomorrow is the day the PICC BS gets started. I'm wavering between full on terrified-for-my-life fear and morbid resignation. Part of me, after talking with a couple friends who've had one, thinks maybe it won't be that horrible - a royal PITA, and a major complication to my life, but not horrible.

The other part of me is absolutely convinced that with the odds ever being against me, this is going to be another, very expensive, very problematic issue for me and is probably going to cause me more problems and complications than I can possibly imagine.

I'm doing my best to fight off depression that just wants to rule right now, and I'm not always being all that successful. I'm pretty grumpy. I'm finding I have little to no tolerance to listen to other people's problems (unless their situation is at bad or worse than mine, in which case, I seem to have developed more sympathy than I've ever possessed). Friends talking about how "messed up" they are over an online friendship gone wrong - even though they've NEVER met that person in real life - just makes me want to scream! It's all I can do to not tell them to just STFU, you're upset over a virtual friendship, while I'm sitting here facing the scariest medical situation I have ever had to face, and to be honest, I don't give a flying rat's ass about your online friendship problems.

Thankfully the brain to keyboard filter is still somewhat in place and I avoid saying those things (which aren't very nice) by pretty much just not saying much at all.

This is causing me to withdraw even more. Probably a time when I need people more, but I withdraw because:
a) I know I'm cranky, grumpy, and I don't particularly want people trying to make me "feel better" by telling me how good things will be. Fuck off. Unless you have real advice - ie, you've lived through similar and have some REAL advice, STFU and quite telling me how I'll "get through this and life will be grand."
b) My emotions are drained. I'm not likely to be very compassionate right now, and I don't want to hear about your problems. I also admit that I don't want to be distracted from my problems unless it's something I'm choosing to do. Preferably alone.
c) I'm not in an entertaining mood. I may do okay around people when I have to be, but it's doubly-draining compared to normal. Small talk is beyond painful. Even not small talk that right now just seems - trivial - I have trouble being engaged in. So, easier to avoid than appear like a distracted arse.
d) I don't want to be disappointed again by offers of help that never pan out. Better to just believe I'm on my own and save the offers for help for the times I really, really, REALLY need it.

I'm scared of hoping for things to not be "too bad" right now. Nothing about this has shown me that being "hopeful" has helped in any way, shape, or form, and I'm shunning hope. I still want to hope, but also realize that ALL that does is set me up for more disappointment. Better to just accept it as it comes, and expect the worst case scenario. Right now, I've managed to convince myself that I'll be lucky to come out of this with my leg still attached and that that will be my best case scenario....and don't hope for that, pretty much start planning on losing the damn leg and figuring out how you're going to live your life once that happens.

I know it sounds doom and gloom to people, but let's face it, it's not an impossibility, and at this point with everything that's gone wrong so far, statistically speaking, it's still very much on the table....

Open Letter to the Dude That Hit Me

Warning - NSFW language

Pretty sure he'll never read this, as his life has moved on and I'm guessing at best "our" crash is nothing but a hazy memory for him - if it even holds that status. So this "open letter" is mostly to get some things off my chest that I've felt the need to say.

You, sir, are an ass.

And that's kind of the nicer of the terms I sometimes use.

Trust me, I get that with riding (and especially racing) motorcycles, shit happens. Happens to all of us, we make a bad judgement call, and if we're unlucky, we may drag someone else into our stupidity. It's one of the unfortunate aspects of the sport. Good sportsman, however, take responsibility for their actions and will go out of their way to, at the very least, apologize and do their best to help the other person out (as much as you would in a "no-fault" environment).

I'm not sure if at some point you did or did not give a very fleeting apology, but if you did, it was disingenuous enough that I have zero recollection of it. You had another day and a half to make it clear that you felt bad about the fact that you made a mistake, and I paid a really fucking high price for your ego-driven need to not sit behind a girl for one corner in the middle of a training class. Therefore, my only conclusion is that you didn't give a shit. We also became FB friends that weekend, and I have NEVER gotten so much as a "hey, how's it going, sorry things are so fucked up" note.

While your life has moved on, Mr. Testosterone, mine is still a daily battle to try to keep my leg, function alone, and get through this alive. All because you just had to have that pass. And were too much of a spoiled brat to even think that maybe, just maybe, the person who's life you destroyed for the next year, the person who, for the rest of their given days will NEVER be allowed to forget this day since every-single-step they take will serve as a reminder of your stupidity, deserved a real apology.

Yes, I'm pissed. Pretty sure rightfully so. If I ever see you in person again, you had best be presenting yourself with the most humble, groveling apology known to man, or don't get anywhere near me. I am not sure I could contain myself or if this pent up rage over having my year, life, and foreseeable racing career destroyed, delayed, and who knows what other impacts, will surface and you will, at minimum, get an earful of exactly the kind of worm I believe you to be....and to be honest, at this point, I'm not sure I'd stop there.

All I needed was an apology, a sign that you felt bad that it happened, and that you had some iota of concern for the person who's life you have forever altered.

There are very, very, VERY few people on this planet who I have come to loathe. You, sir, at this point, are one of them. If by some unknown reason you get wind of this letter, the truth is that I'm a pretty forgiving person - a little humility and concern on your part would go a really, really long ways towards repairing my opinion of you. In the meantime, however, you have officially been placed on the extremely short list of people (um, I think there's only two of you on there) who I do not ever want to see in my entire life. Or maybe I do because then I could get some satisfaction from at least knowing you were aware of what a piece of shit you are in my mind.

Now I shall go return to the nightmare that my life has become. Thanks, asshole, for not even being apologetic that I now am facing the scariest things I have ever had to face because you just had to have that pass. In a fucking training class.

Decision Made, PICC It Is

Welp, at my ortho appointment yesterday, while I was there, he called the ID doc and they talked over the phone right then and there. Due to the location, with it being skin right over the plate, hardware is definitely involved, so they decided on the 6 week antibiotic routine.

I must admit, I am beyond terrified. The idea of something sitting in my chest, that close to my heart, capable of killing me if things go wrong I find more than a little disturbing. This is probably the most scared I've ever been about anything medically related in my entire life. Part of it is that I'm not "sick" in the sense of being laid up and off work and having nothing better to do than take care of this thing - no, I still have to show up to work, I still have to deal with my daily routines, and how the fuck am I supposed to do things like infusions in the middle of the day?!? Go sit on a toilet for an hour?!? THAT sounds nice and sanitary! [I really hope you read the dripping sarcasm going on here].

I'm terrified of needles to begin with, but after being in the military I learned to cope and get through it. I still cannot watch, and having someone poke and prod around I've literally been gripping my sheets not to punch them....while I'm guessing this will be better than dealing with that every day, I'm not seeing any other positives in this.

The plan is this for 6 weeks (god o god please don't let this get infected - with a 1 in 4 chance of it getting infected, a 30% chance of complications, I don't see the odds being in my favor when the reason I'm on it to begin with is due to an infection!), then, once this is done, give things a couple weeks to see if the infection re-emerges. Assuming it does, then we'll schedule hardware removal. Right now, basically, the whole point of this is trying to buy a couple more months of bone healing so there's less risk of re-fracturing the leg once hardware is removed. I think we're pretty much assuming it's going to have to come out...

Only "good" things (if you can call anything good at this point) is that I will be done with the antibiotics before I'm supposed to leave for Italy (barely), AND, I'll still have my hardware in at that time so mobility won't be an issue. Who knows how I'll be feeling though :/

Secondly, IF we have the luxury of a little leeway on hardware removal timelines, there's a chance I could avoid missing any race rounds - if we pulled it right after round 4 in July, then there is a 6 week window until the next race round...which, hopefully, would be plenty of healing time. For people who don't have to have things removed early recovery is usually 2-3 weeks, so 6 weeks would be pretty generous...

Lastly, according to the ID doc, there are no "limitations" from them on what I can or cannot do. Not what I hear from other people or read online, but it does seem to vary a little bit. Guess I'll find out more on the dreaded day.

Mostly though I'm very, very scared of complications with this picc line - because the complications can be very, very serious (like deadly) and can often require ER visits and the like even if you catch it quickly. Living alone, with no BF, family, or anyone else nearby who can help is another level of complications. Traveling to and from work, dealing with this while at work - all of it. That, and let's not forget that you have something sitting, literally, millimeters off your otherwise healthy heart....

Yes, I'm terrified. Like, panic attack terrified.

I do have a friend who's had one for a similar situation (otherwise healthy person who wasn't sick and laid up) and she reached out to me and is patiently providing some info and answering my questions as I come up with them.Most of the online stuff I find is for people on chemo or with advanced Lyme's disease, or elderly people - very, very little out there for otherwise healthy, active, adults which isn't helping the situation since I fall into the last category!

Most reports say it's not as scary as it seems - for the love of god I hope they're at least a little right.

No End in Sight

So, I had the dreaded appointment with Infectious Diseases yesterday. Unfortunately, it was basically inconclusive since he was missing the findings from my clean/debribe surgery AND my last lab test results. So, mostly, he checked it out, we discussed the history of things thus far, and then discussed possible scenarios.

Basically, this can go one of three ways from best to worst case scenarios.

Best case: It's just a sub-cutaneous infection, and hasn't actually involved the hardware or bone, in which case we will continue with oral antibiotics and monitor things.

Mid-case: The hardware is involved and there is biofilm over it. This can go a few ways depending on the orthopedic standpoint and outlook. If the hardware needs to stay in, then it's 6 weeks of IV antibiotics followed by another 6 weeks of oral antibiotics. If the hardware can be removed, that removes the danger (and the inaccessible by your body bacteria) and treatment would be easier.

Worst case scenario: The bone has become infected. If that is the case, we are in dangerous territory. Removing hardware ASAP is important, but no matter what it will be intensive IV followed by oral antibiotics. This is where people lose legs, and things get really scary.

Since my ortho left the hardware in, AND I haven't gotten a call to schedule another surgery, I'm HOPING the last case is definitely not the case - but I can't confirm that yet. There are a few (small) things in my favor - one, this hasn't been festering in there for long. Some people go years without a conclusive diagnosis, and by then the infection has so well embedded itself that eradication is often only attainable by amputation or invasive and continual surgeries and treatments. At least this manifested early and my body reacted, and we knew what we were dealing with....even if it's been latent in there since my last ORIF, it's still 'only' been a matter of 4 months instead of years.

Secondly, it's not MRSA. While the bacteria in there is NOT a good one to be fighting due to it's ability to quickly mutate (enterobacter cloacae), making it harder to treat, it seems like it's at least a better situation than dealing with a MRSA infection. Not much better, but slightly as there are a number of treatment options that seem to be successful depending on the strain.

Third, my doctors are on this like flies on shit. They aren't wasting time, they aren't being lax, and they are treating it quickly and decisively rather than dragging their feet or being unconcerned like a lot of people online seem to report.

Of course, for me, my mental state is getting a bit - edgy. I'm holding it together (most of the time) but I feel myself on that edge. Thankfully I can still ride, which is keeping me sane (literally). I asked the ID doc about riding with a PICC, and as far as he's concerned, if I'm cleared by the orthopedist to ride, there are no restrictions or limitations with the PICC line. That makes the process more bear-able for me. It will still be a nightmare, and the "inconvenience" is going to be horrible, but maybe I can at least retain my sanity...

Part of me, however, is of the opinion to just pull the hardware at the end of the month and be done with, and quite playing games with infections. I realize I'd be laid up again, but that would be 5 full months of healing behind me, and I would think that it shouldn't be more than a few weeks of being laid up...granted, I'm no doctor, but that's my gut feeling on it.

So, things are still very much up in the air and I'm still in no-man's land of what is going on. I meet with my ortho tomorrow, so I plan to discuss options on that end of things so I can start putting things together in my own mind. I don't want to play games with this, racing, my trip to Italy, NONE of that is worth potentially losing a leg over, but that being said, on the flip side, if there's not a lot of danger, then it's nice to have some semblance of a life, too. Guess I'll find out more next week when I meet with the ID doc again.

Saga Continues

UGH. That is all I've got to say about this. This week marked 5 months since I broke this leg....and there's still no end in sight for dealing with the drama. The only saving grace at this point is that I've been able to get back on the bikes, which is, literally, keeping me sane right now. Anytime I spend too much time thinking about or researching my condition and I just want to put my head between my legs and scream, cry, and I can feel the depression that is just waiting for an opportunity to rise up.

As for where I'm at right now - if you were to ask me how I feel, not considering any research or anything else I've done, and I'd tell you that I'm feeling pretty damn good. I've felt pretty good energy-wise, my leg pain is getting pretty minimal, and walking is getting pretty decent again the past couple days.

Ask me how I feel overall, and it's a far more dismal outlook. Research and studies on treating these infections has me absolutely terrified of my appointment with infectious diseases that is scheduled for Monday. I mean, flat out terrified. As in, if I wasn't worried about the possibility of losing the leg if things got crazy, I wouldn't be going. If they decide to treat with IV antibiotics, there are these things called a PICC line they put in - god damn, I thought I was scared of doctors and needles before...reading up on these has me in near panic mode. I have no idea how on god's green earth I'd live with one - I live alone, I have no one that close, and I live with cats. Trying to keep THAT from getting infected, in addition to my leg - FML upside down.

I hear almost no good stories about these things - some that are "okay, I survived it" but no good stories. Seems studies with kids are showing little to no difference between IV and oral antibiotics, but I can't seem to find much on adults. It's going to be 2 1/2 weeks post-op already, so seems like we've already passed the usual "IV" window, at least the common one anyways.

Finding out the particular bacteria involved isn't helping either - it's an unusual (not unheard of, but not common) one more commonly seen in UTI. Apparently an "opportunistic" bug that is gram-negative and can be tough to treat. It is one that naturally lives in our GI tract, which makes me wonder if I got it from my elderly cat before I had to have him put down - while I tried to keep everything clean, if he was getting sick before the very end, who knows, it's a pretty easy bug to get.

Right now I'm feeling a bit bi-polar. When I'm not thinking too much about it, I feel pretty good. My pain levels are low enough (or non-existent), and I feel pretty good. As soon as I spend much time thinking about what all of this may entail - well, life starts looking really bleak. Part of me is of the feeling to just yank the hardware now and I'll go back to being on crutches for a month and be done with it. But I don't know if it would only be a month - or if we'd be looking at months. I'm literally sick to my stomach sitting here writing this. I just spent the past hour or so reading up on some of this stuff (again) and I don't see much positive out there.

So much for being healthy and taking care of yourself making a hill of beans difference....