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The Hopeless Dreams of AnotherLostSoul

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Birthday Thoughts May. 25th, 2007 @ 10:09 pm
it's been a long day.  In fact its been a long week or so since the last time I posted, but today itself has been especially long.  I finally got out of the hospital last week and moved into my mother's house since I'm not yet capable of taking care of myself again.  I'm still not permitted to put any weight on my legs yet, which leaves me generally confined to a bed, couch or wheelchair.  Seeing as the wheel chair itself is extremely uncomfortable to sit in for a pro-longed period of time, I spend most of my time occupying one of the recliners at the end of my mother's couch.  We don't generally leave my wheel chair where I can readily get to it either, as that would tend to clutter the living room pretty badly as well, meaning that I'm forced to rely heavily on other people when I want or need to get up and move around.

On the upside I've built up pretty decent upper body strength from having to use my arms to move my entire body's weight on a regular basis.  So far I feel like I'm adapting to my new situation fairly well.  I still don't sleep very much or very well, and I still have to wear a leg brace on the infected leg except when I'm working with the physical therapist.  Overall though, everything else is a lot better.

This is not to say, however, that everything is wonderful here.  There have been a number of hiccups along the way.  For example, the company that provides my antibiotics and the supplies I need to use them is located in Morgantown, where I was hospitalized.  As a result they have to overnight my supplies to me when I get low.  Unfortunately, the first resupply shipment they sent never reached me.  The delivery service didn't recognize the address and then didn't bother to call to find out where to take them.  Seeing as the medicine has to be refrigerated, the entire shipment spoiled and I had to get them to resend it.  Luckily the second attempt went much more smoothly in the long run.

Unfortunately, my father had to go back into the hospital today to start the first of three consecutive weekends of chemotherapy.  This meant I was left entirely alone today for several hours.  Several hours during which my mother's cordless handset battery died leaving me with no reliable way to answer the phone.  I solved the problem, but not without sliding into the floor of the living room, dragging myself across the room to the corded phone and then struggling back and up onto the couch once more.  Exhausting and painful, but unfortunately necessary since I could hardly go for three days without my antibiotic (courtesy of the long holiday weekend) and had to take a call from the delivery company to give them directions.

Otherwise, this has been a pretty good day.  Both of my sisters called me at different points to wish me a happy birthday and my brother even got me lunch today.  I guess I can't really complain for the most part.  As birthday's go...it could have been much much worse.
Current Mood: exhaustedexhausted

Wits End May. 14th, 2007 @ 04:51 pm
I fear I have reached the end of my ability to endure this ordeal.  I am finally well enough to be released from the hospital, with the proper home health care, and to move in with my parents for awhile whilst I continue to recover from the accident, yet I cannot be released.  In the whole of the entire region in which my parents live there is not a single home health care provider who will both accept my health insurance and meet all of my care needs.  The one agency which could accept me, cannot arrange the physical therapy I require to fully regain the use of my legs.

As such I am rapidly finding myself in between a rock and a hard place.  The doctor's will not release me from the hospital where I currently reside without the home health care I need, I cannot arrange the health care required in the one place where I can live at the moment, and the insurance is loath to continue to pay for the expensive, in-patient services of the hospital.  What in the name of all that is holy am I supposed to do?  I certainly can't afford the costs of staying in the hospital if my insurance refuses to continue paying for it and the issue of who is and is not willing to accept my insurance is certainly beyond my influence as well.

I find myself growing exhausted with this entire situation.  No, exhausted is too light a word, I find myself growing weary.  Weary in my heart, mind, spirit and body to such an extent that I find myself entertaining thoughts that it might have been better had I not survived the car accident at all.  I am losing hope.

I can only pray that this problems are resolved soon, because I don't know how I'll cope otherwise.

Update the Fourth May. 9th, 2007 @ 08:01 pm
Sometimes my life seems to suck beyond the telling of it.  Tomorrow morning, May 10th, I will have been in the hospital for exactly 5 weeks.  What's really aggravating is that I only have one or two obstacles between me and getting out of the hospital.  The first obstacle is the fact that my left leg, which had the more severe injury, still needs to stop draining.  I have a bacterial infection in that leg which is probably why the doctors are having so much trouble trying to stop the drainage.  The second obstacle has to do with arranging proper home health care for when I do get released from the hospital. 

Since my leg hadn't stopped draining, they decided on Monday of this week to go back in surgically and clean it out again, which they did Monday afternoon.  While I was unconscious, the doctors also decided to flex my knees and see how much of my range of motion I had regained.  The knee in my bad leg can only flex about 110 degrees while the knee in my good leg was able to flex to the full 'normal' range of motion.  Unfortunately, the pain and stiffness in my muscles means that I can't flex nearly so well while I'm actually awake and able to feel pain.  This also means that the muscles in both legs are in a good bit of pain since the surgery and need time to heal up a bit.  The muscles in both legs have just been essentially over-stretched and over-worked...kind of like I had an overly vigorous work-out.

Tomorrow morning the doctors will finally have some idea of whether or not the wound in my leg is still draining, so there is some hope of me getting out of here by the weekend.  Of course, I'm not capable of living alone yet by any stretch of the imagination.  I still need assistance moving into and out of my wheelchair, or on and off of the toilet and that sort of thing.  Plus, my apartment is not handicapped accessible by any stretch of the imagination anyway, so I'm going to be staying with my mother and step-father for a couple of months or so.

I'm pretty well exhausted at this point, but that's how things are going so far.  I may yet manage to make it through this ordeal.
Current Location: Ruby Memorial Hospital
Current Mood: tiredtired

Update the third: Good days and Bad days May. 1st, 2007 @ 08:27 pm
Well, I've been in the hospital for 26 days now with no definite end in sight.  My left leg is finally starting to heal up, but it's still draining a little bit along one set of stitches.  The official opinion is that once my leg stops draining and has been dry for a couple of days, I might finally get released from the hospital...provided that the necessary provisions for at home health care have been arranged. 

The past two days have been a bit roller-coaster-y unfortunately.  Monday, I had a really good day.  My baby sister, who just happens to be a registered nurse who works oncology, came up to visit me on her day off.  She brought me lunch from outside the hospital and even took me outside so I could get some fresh air and sunshine.  It was probably one of the best days I've had since I was admitted to the hospital after the accident. 

Today, however, has definitely offset yesterday's high-point.  At seven o'clock this morning one of my doctor's came up, along with one of the orthopedic residents, to change the dressing on my left leg.  This is typically a painful and aggravating experience, the doctor's tend to do it as quickly as possible without much regard for how it feels for me.  Today was no different in that regard, they quickly changed the bandages on my leg and re-secured my leg in the locked brace they keep both of my legs in to restrict mobility.  This time, however, the pain was considerably worse than normal.  I currently have 2 pain medications that I have access to per doctor's orders: an injection that I can have once every 3 hours and pills that I can take every 4 hours.  The pills are far more effective for pain relief and last a lot longer, but the injection works faster for when I need more immediate relief.  So I called for an injection of pain-killer after the doctors re-wrapped my leg and then, half an hour or so later, I took a dose of the pain pills as well because it still hurt quite a bit.

The drugs made it possible for me to sleep until around lunchtime at which point I forced myself to wake up and eat.  The pain was steadily getting worse as the pain medications wore off and I tried to figure out why.  Typically, the pain from changing the bandages on my leg fades back to normal within a matter of hours.  So I pulled the blankets off my leg and looked at the brace on my left leg because the leg's position just felt wrong.  I immediately noticed that the brace was on wrong.  Instead of my knee being in the gap between the thigh and calf pads of the brace like it was supposed to be, my knee was wrapped up in the thigh pads and the whole leg was in pain as a result.  One of the physical therapists helped me get the brace back on correctly and we iced the knee down for a few hours.  Thankfully, that got my pain under control and the rest of my day was a big improvement.

On a side note, my stepfather managed to get himself sick and ended up spending a couple of days in the hospital again.  In no small part, this is because he refuses to accept the fact that he needs more rest than he's letting himself have.  So my mom went over his head and talked to his boss, guaranteeing that he is no longer allowed to work more than 4 hours a day.  He's on the mend now and I think he might finally have figured out that the doctors really did have his best interests in mind when they told him to take it easy.  I guess we'll see.
Current Mood: exhaustedexhausted

Update the Second Apr. 24th, 2007 @ 06:55 pm
After a bad spell at the end of last week, I ended up needing a third round of surgery.  Monday afternoon, the surgeons reopened the incisions in my left leg and cleaned out the wounds.  They also took some cultures to check for developing infection in the wounds since they were clearly healing more slowly than could be considered normal.  The pain yesterday was bad and it took a lot of medication to get back on top of it.  Today, started off okay, my pain was in control, and I was resting comfortably.  The cultures were still clear first thing this morning and I was hoping that everything would be fine.

A few hours later, however, one of the cultures was showing some growth which means only one thing: bacterial infection.  Unfortunately, this means a lot of antibiotics are in my future.  Depending on what specifically is growing in that culture (which they won't know for a couple of more days), I could be in for as much as 6 weeks of intravenous antibiotics to battle it.  Overall, its been pretty much a crap day since then.

Still, it could be worse, with a little luck maybe this leg will finally start to heal as effectively as the other has.
Other entries
» Update the First
First off, my deep and heart-felt thanks to everyone who has wished me well in my recovery process.  I truly appreciated it and am a firm believer in the healing powers of positive thoughts, be they well wishes, prayers, or whatever. 

I had a second surgery at the mid-point of last week.  This surgery took away all the external rods and pins that were holding everything in my legs in place, opened up both knees, and using a few plates and a bunch of screws fixed everything back in place permanently.  If you want a good idea of how my legs were broken, I can give that to you now too, since I finally understand the nature of the breaks a bit better.  Make fists out of both hands and press them together at the knuckles.  Now imagine that is my knee joint.  One of your fists represents the bottom bone of my knee joint, so focus on that one.  Now, while looking at the back of your fist, imagine a crack in that imaginary bone that starts at the mid point of the second knuckle away the thumb and extends all the way down your fist, slanting toward the thumb slightly, and separating a big chunk of bone entirely from the rest.  That crack, exists in both of my legs.  For the left leg, imagine a second crack however, running from the center of the ring finger knuckle and slanting off toward the flat of your fist and separating a second chunk of bone. 

Needless to say, everything still hurts.  A lot.  The surgery to rebuild everything internally was a great success though.  The swelling in my right leg has actually already reduced to the point of being almost normal.  The left, however, is much, much slower to heal at all.  So far I'm still in the hospital and am looking at a minimum of 8 to 10 weeks before being able to put any weight on either leg again.  They'd like to be able to release me, but we run into a series of problems in that scenario:  My apartment is completely handicapped inaccessible, there's no way for me to get or out of it., I can't take care of myself at this point and I live completely alone.  There working on some possible solutions, but so far...nothing has worked out. 

I'm still here, though.  And progress is being made, slowly, but surely.
» Degrees of Pain
You know, I had always believed that I knew what pain was...that I could cope with the sensations and endure.  I believed in my infinite arrogance that people who had to rely on pain medication, to any significant degree, were weak.  That they were somehow inferior to me as a result.  I believed that through concentration, a meditative mind-state, and force of will that I could overcome pain with minimal chemical assistance.

I endured the most excruciating pains of my life without ever feeling dependent on medication.  I suffered from migraines that would leave other folks crying for relief and often didn't even take the medication necessary to relieve my unpleasant symptoms.  I dealt with pain in my kidneys and back that left me begging for relief and thought myself somehow a better person for my ability to endure.  I was stupid and I owe most of the people in the world, people whom I quietly looked down on,  a big apology.

Until this past Thursday, I didn't know what pain was.  I'd never experienced the kind of gut wrenching, throat-ripping agony that really qualified as pain until my accident.  When they managed to pull me out of my car on Thursday...I screamed.  The raw, deep seated kind of screaming that people who know what real pain is do.  I've never in my entire life felt such unabated agony as that.  Then it got better.  Pain medicines were administered that quashed the worst of it.  By the time I finished the first surgery, they had me on a morphine pump, allowing me to self-medicate up to once every eight minutes.  I drifted through Friday and most of Saturday on a narcotic haze that made the entire situation seem far more bearable.  Probably more bearable than it actually was. 

Then, Saturday evening they changed my treatment for pain.  Instead of a self-administered, as needed, pain medication, I receive two pills every 6 hours.  I'm left relying on nurses to bring me the relief I so seriously need, because I am in pain.  For the first few hours after I get a dose, I am fine and all is well enough with my world, but as the clock ticks down toward the next dose, things change.  By the time I get into my final hour before a new dose, I'm watching the clock and praying that the nurses aren't late with my meds.  I hate feeling this way, I hate needing something like this, but I don't have any real options.  I can't endure without the help. 

For the first time in my life, I really, really know what it is to live with pain.
» Frying pans and fires
Well... I think the universe hates me.  It's the only rational explanation for my current situation.  

I was in a serious, nearly head on, car accident on Thursday morning.  If it hadn't been for my air bags working and my seat belt being fastened...I would be dead.  Instead, I just managed to break both of my legs.  I got cut off by another driver who was at fault for the accident, so naturally she walked away just a little bit banged up while I got seriously hurt. 

I've had one surgery already to start working on the repairs.  It's going to be at least 3 months before I can even start to work on learning to walk again and I'm going to be trapped in the hospital for a long, long while to come.  Plus I'm in varying degrees of excruciating pain.  Luckily, I have disability insurance at work, because I'm going to be out of work for at least 3 months, maybe even as long 6.   At least I can check my email though and LJ, cause I'm going to need all the support I can get to make it through this....
» Fear, Uncertainty, and Doubt
It's been a helluva month since my last update.

I started out worried about something being really seriously wrong with me.  My doctor was sending me to a neurologist because of a change in the way I get migraines.  Recently some of my migraines have begun to bring some really odd symptoms with them, things like an inability to focus my eyes, dizziness, and numbness in my extremities.  It took me a bit to get in to see the neurologist, and when I did the news was terrifying.  He sent me to have a head CT because I might have a brain tumor.  It took another week to get the CT done and a second week for the doctor to get the full report. 

Thankfully, it didn't turn up any abnormalities, but that was probably the scariest week of my life up to that point. 

Unfortunately, during that same week, my stepfather ended up going to the hospital for serious back pain.  It turned out that he had a crushed vertebrae and something that appeared to be either a lump or a lesion in the tissue near the vertebrae in question.  They decided to do a biopsy on whatever it was just to be safe.  He also had some blood abnormalities: low blood platelets and some vitamin deficiencies.  He got the biopsy results on the same day that I got my CT results.  I didn't have cancer but he did.  They diagnosed him with lymphoma at that point and referred him to an oncologist who scheduled a few additional tests to verify the diagnosis and figure out which type of lymphoma he actually had. 

He was in and out of the hospital during the between the diagnosis and the first set of tests.  His blood abnormalities persisted.  They gave him platelet infusions and they didn't seem to help significantly.  So exactly one week after the lymphoma diagnosis, we got the first hint of what might actually be even worse news.  Two days later, which is to say one week ago this past Thursday night, we got confirmation.  My stepdad has acute lymphocytic leukemia.  They transfered immediately transfered him to the university hospital at Wake Forest for treatment since our hospital wasn't equipped to handle the initial treatment plan for this type of leukemia.

He's going to be in the hospital there at least until after Easter while they put him through his initial rounds of chemotherapy and the other treatments he needs to get started beating this.  There is, of course, no cure for it but this type of leukemia can be successfully put into remission if he responds well to the treatment.  Unfortunately, there's nothing that we can do except hope and pray that it works.  If, for whatever reason, he doesn't respond to the treatment...the disease will kill him. 

*sigh*

I've been trying for over a week now to write this here, but writing it...seeing it put into words like this is difficult.  I'm not close with my step-dad and I haven't been for a long time.  He and I are both too much alike and far too different to see eye to eye on just about anything and so we both tend to keep a careful distance from one another.  We have to, otherwise we fight like cats and dogs.  Still it's unimaginably painful to know just how bad the situation is and that I can do nothing to help him.
» Headaches and Hopeless Idealism
I had one of those moments today.  The kind when you realize just how cynical life has made you over the span of a few decades.  At work earlier today, I got stuck listening to a new guy, some naive kid who's just out of college and so wet behind the ears that you could use him as a scrub brush.  This kid spent the better part of an hour regaling the lady in the cubical across from me with all these ideas he head for how he could essentially save the world.  In his mind, he knew everything:  how to fix America's crime problem, how to help all of the troubled kids, how the government could pay for all the amazingly effective social programs he'd dreamed up by just increasing taxes 'a little', the whole nine yards. 

This kid was practically a poster child for extremely liberal thinking...which in turn got me to thinking.  There was a time in my life, as I suppose there was in most people's lives, when I believed that the power of a single good idea could change the world.  When I believed without question that one person really could make a difference.  Somewhere along the way, the real world stripped away those beliefs, tore apart that faith in how the world could be and left nothing behind but a cynical acceptance of the world is.  On some level, I guess that's just what it means to grow up.  To realize that the world just isn't as simple a place as you thought it was.

Maybe it's just me, but sometimes I wish we could just hold onto that kind of hopeless idealism...but unfortunately, these days it just gives me a headache...
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