New news

I saw an infectious disease (ID) specialist today, and I'm looking at at least eight weeks of twice a day vancomycin by IV plus some other oral antibiotic. I go in next Wednesday to have a Hickman device inserted for the vanco IV. This medication is very harsh and can burn up the smaller peripheral veins (the ones in your arms). The Hickman is a device inserted into the jugular toward the vena cava (much bigger and tougher veins). The other good thing with this device is blood can be drawn from it to gauge my health without extra needle sticks.

Besides having IV vanco twice a day, I also see the ID every single week. If my orthopedic surgeon decides that the rod has to come out, then my eight weeks of vanco starts all over. I won't be able to call him until Monday because he's not in the office of Friday.

When we left, I went and got a chocolate Freddy's Frozen Custard. Screw my diet.

Here's a good schematic of how the device works.

This just keeps getting better and better

Happy day! My leg hole has MRSA!

Listen here you nasty, sneaky little bacterium of doom -- you will NOT prevent my graduation. You might delay it (what else is new?), but you will not prevent it.

*rather loud string of colorful metaphors*

Enough is enough

I would love to have a few days to work on this dissertation. On Feb. 2 and 3 I had a horrible muscle spasm that nearly made me throw up. On the 3rd, my doctor was out of the office, so I saw his partner who gave me 10mg of Valium to take three times a day -- with my 5mg Percocet. So, needless to say, I have done nothing but fall asleep in my chair for days. And I still have pains. Not as bad, but still enough that I can't concentrate on shit.

Oh, and it turns out the Valium and antidepressants (I've been on Zoloft since the Wreck) don't generally mix well. I literally bawled my eyes out Friday night because I was missing brisket and potentially chocolate creme pie at a church Valentine's banquet. Yes, I hate Valentine's Day, but I love brisket and chocolate pie! Mom and Dad, bless 'em, bought me Woodie's BBQ (nummy ribs and pulled pork) and a chocolate pie on Saturday. And on Monday, my doc told me to double my Zoloft.

AND I have a minor surgery on my leg tomorrow because one of my Wreck scars has been seeping goo for months.

FML.

I just want to freaking graduate! It's been EIGHT EFFING YEARS!!!

I miss you, Stacy

Eleven years ago, the first of two events occurred that I never thought I'd have to handle -- my younger sister died of respiratory distress related to spinal muscular atrophy.

I miss you, Stacy.

Meh

Hopefully the pain specialist can figure out why I've been having all these new and interesting (she said sarcastically) pains and spasms over the last year, especially in the last couple of weeks. Hopefully it's not autonomic dysfunction resulting from the Wreck, as my GP thinks.

Edit:Turns out, Medicaid doesn't recognize the need for pain management. The place that called me said they would give me their "special self-pay rate" of $325 per visit, due in full at the time of my visit. Oh, and I get to drive 45 miles one-way in a van that maybe gets 15 miles to the gallon, with gas at $3.59 per gallon. Did I mention I'm only getting $672 per month in federal supplemental income -- assuming, of course, that the government doesn't default?

Guess who's not going to get pain management.

Ow! Ow! Oh crap that hurts!

Over the weekend, I had some HORRIBLE shooting pains in my left foot. On Saturday, the pains hit me every 15 seconds to 5 minutes, and this went on for SEVEN HOURS. I've had a few pains since then, but nothing like Saturday. I went to the doctor today to see if he could help me with it. He's worried that I'm experiencing autonomic dysfunction due to last summer's Wreck. He's sending me to a pain specialist to sort it out. He's also sending me to a lymph-edema clinic because my legs and feet are badly swollen. It would be nice to have more normally sized feet again.

Day of awesome

Thunder, rain, hot cocoa, a relatively painless hip, and (so far) totally painless legs. Can the day get much better?

Sleep is elusive

I was awakened this morning by numerous puppy kisses -- first by Spanky (the four-month-old cocker spaniel who loves to roll around on my head), then by Mairead (the eight-week-old snuggle-icious rottweiler). Not a bad way to start the day, but I'm still so sleepy. I don't even have the energy to be annoyed that said puppies are currently shredding a Ding Dong wrapper that the Spankster got out of the small trashcan next to Dad's recliner.

Ouch!

If this "cold front" that's moving through the state today is making my legs ache like this, I have a horrible feeling that Spring with all its thunderstorms is going to be hell.

Yay.

Pooped

I am so freaking tired today. Like, down in the bones, my brain hurts, my eyes are filled with sand tired. I have a book on bonobos sitting on the table, begging to be read, but it feels like even that would take too much energy. It's not like I've done anything to warrant being this tired. So, I was in my chair for eleven hours yesterday, but I was even starting to feel this way yesterday. So strange.

Here I am

Last Thursday (19 August), I had my second ortho checkup. My arm and left leg are healing well, but the plate in my right leg has shifted a half an inch because my bones are so weak. The orthopedist ordered a cessation of physical therapy on that leg and is trying to get me a bone stimulator to help with the healing on my legs. I'm also making a point of drinking a packet of Carnation Instant Breakfast every day for the extra vitamins and minerals -- maybe they will help the healing as well. I will remain in rehab until my bones are able to handle me using the two-piece sling I use for transfers at home (minimum another month).

Furthermore, we discovered earlier this week that my left foot has been sweating in its brace, and so I have a couple of spots in the beginning stages of skin breakdown (skin red but not broken open). I will be getting my ankle x-rayed at some point to see if I even need the brace or if the tib-fib fracture is healing as slowly as the breaks.

I actually got girly on Wednesday and bought a couple of skirts. ::shiver:: I don't think I've bought a skirt or a dress in almost 20 years. It's just that even shorts are a pain (literally AND figuratively) to put on over these leg braces.

OK, I think I may get back in bed soon and get to work on my manuscript revisions . . . IF I can keep my eyes open.

Yes, I'm alive

For those who didn't know, I was in a car accident on June 7th in which a 20-year-old failed to pay attention to the large red stop sign in front of him, causing us (my parents, Reba, and myself) to hit him at 50-55 mph. Mom bruised her right hand and knee, Dad had a concussion, Reba's sutures from a surgery that morning tore open, and I broke my right humerus and both femurs and cracked my left tibia and fibula. I underwent a six-hour surgery on June 9th to attach plates and screws to my humerus and right femur and a rod along my left femur. Basically, I now have more hardware in me than a Home Depot.

I was in the hospital for three weeks, then I was transferred to a rehab facility where I still am. I get therapy on my arm five days a week and on my legs six days a week. I'm not healing as quickly as *I* would like, but I am healing. Moby (my van) was totaled, which upset me a lot. She was a good van, and she didn't deserve to go out like that. My folks quickly found me a new ride, though -- a maroon-colored 1993 Ford with a working AC. I have christened her the Red Baron.

Isn't life grand?

Poop poop pee doo

Not feeling so hot today. I'm really wishing I could trade my body in on a better model, one without all the aches and maybe a bit more muscle strength. Just enough to, say, get a drink out of the fridge, make my own snack, comb my own hair, help Mom fold the clothes. That's not too much to ask, is it?

On the plus side, looks like there's going to be semi-homemade rolls with supper.

Last post of 2009

Y'all have fun partying. I'll be in bed trying to sleep off this head cold and sore throat.

Happy new year! Remember -- it is illegal to shoot your firearms into the air if you live inside city limits, not to mention stupid.

Time to see if my tea has cooled to "just right."

Yeah yeah yeah

I know it's been a bit since I blogged, but after I get home this weekend, I'll try to take time to catch you up on the last ten weeks or so. I've just been quite busy despite depression and health issues.

So, I'll be in KS in time for supper on Saturday, and I will be around until July 29. There are pals I'm hoping to see, and you know who you are (especially you four -- Mouse, Psi, 'wela, Lachlan -- who I have not seen since P's funeral). So much to do this trip:

-- get my stupid blood under control

-- finish one manuscript, start two others

-- hang out with my peeps and hug 'em all (especially the 6-month-old nephew) 'til their eyes bug out

-- read a s*** ton of research articles

-- see HP and the Half-Blood Prince

-- get some things fixed on my chair

-- fun, novel-type reading

-- maybe talk Rolando into going to the zoo, especially the one near my house

-- do my yearlies with the cardiologist, the neurologist, the pulmonologist, and the urologist

For now, more library research. 'Night!

So

My laptop is on the fritz.

I have a UTI.

I have not a lot of money to feed myself this month.

Reba has no monthly flea meds (Surprise! I thought there was one more.), her shots are due, and she needs a haircut in the worst way.

I have a CfH (Cold from Hell) that allows me to hack GGGs (Great Gobs of Goo) all day plus bestows upon me mounds of head congestion.

I'm not getting the fellowship I needed for next year, so without an amazing miracle plan that will give me about $35K, I will have to drop out one year from finishing my degree.

In short, I'm a broke, sick failure.



How is your April?

Countdown to GE Day -- 12 days / Choking / New Year's Lists

So yesterday I accomplished nothing in the Great General Exam Preparation (hereafter referred to as GGEP), not a single Powerpoint slide nor a single scientific word read. I offer no excuses but laziness.

I've had a cold for about a week, and this morning it tried to kill me. Literally. I woke up feeling hot and moved to push down my blankets. That done, I rolled my head from right to left to stretch my neck muscles. (Warning: potential ick factor ahead) When I did so, apparently I shifted a wad of mucus so that it blocked my airway. Unfortunately, this was stuff that had been sitting for a bit and had started to harden, thus it wasn't easy to get even a tiny bit of air around it. I had an initial second of panic in which a whipped my head back and forth a couple of times, and I must have moved it again a bit because I was able to draw a small breath. I used it to cough against the wad, moving it a little more. Another small breath, my brain screaming WANT MORE, but I kept my cool and coughed again. Small breath, cough, a little bigger breath, cough. I was making horrible mucus-y gagging choking sounds, but it occurred to me that I wasn't loud enough for my dad to hear me in the living room. I thought, "I could die on my own mucus right here." As soon as I thought that, a louder thought came through: "F--- THAT! I'm defending my proposal soon!" I coughed a few more times, and I was finally able to start the clearing your throat action. After an hour (really probably 15-20 seconds), I cleared my airway completely and took a gigantic breath. I coughed a few more times just to be sure, then thanked the Higher I got rid of it. I'll be glad when this cold is gone!

Finally, as the New Year begins, I'd like to share this wonderful insight I received on Wednesday from DailyOM. It really affected me, and I hope you enjoy it.


New Year's Resolutions: The Two Lists
A Message from DailyOM Co-Founder Scott Blum

I was fortunate to spend time with an enigmatic man named Robert during a very special period of my life. Robert taught me many things during our days together, and this time of year reminds me of one particular interaction we had.

"Now that you are becoming more aware," Robert said, "you need to begin to set goals for yourself so you don't lose the momentum you have built."

"Like New Year's resolutions?" I asked.

"That's an interesting idea," he smirked. "Let's do that."

By then I was used to his cryptic responses, so I knew something was up because of the way his eyes sparkled as he let out an impish laugh.

"Tonight's assignment is to make two lists," Robert continued. "The first is a list of all the New Year's resolutions you WANT to keep, and the second is a list of all the New Year's resolutions you WILL keep. Write the WANT List first, and when you have exhausted all of your ideas, then write the second list on another sheet of paper."

That night I went home and spent several hours working on the two lists. The WANT List felt overwhelming at first, but after a while I got into writing all the things I had always wanted to do if the burdens of life hadn't gotten in the way. After nearly an hour, the list swelled to fill the entire page and contained nearly all of my ideas of an ideal life. The second list was much easier, and I was able to quickly commit ten practical resolutions that I felt would be both realistic and helpful.

The next day, I met Robert in front of the local food Co-op, where we seemed to have most of our enlightening conversations. "Tell me about your two lists," Robert said as the familiar smirk crept onto his face.

"The first list contains all the things I SHOULD do if I completely changed my life to be the person I always wanted to be. And the second list contains all the things I COULD do by accepting my current life, and taking realistic steps towards the life I want to lead."

"Let me see the second list," he said.

I handed him the second list, and without even looking at it, he ripped the paper into tiny pieces and threw it in the nearby garbage can. His disregard for the effort I had put into the list annoyed me at first, but after I calmed down I began to think about the first list in a different light. In my heart, I knew the second list was a cop out, and the first list was the only one that really mattered.

"And now, the first list." Robert bowed his head and held out both of his hands.

I purposefully handed him the first list and held his gaze for several seconds, waiting for him to begin reading the page. After an unusually long silence, he began to crumple the paper into a ball and once again tossed it into the can without looking at it.

"What did you do that for?!" I couldn't hide my anger any longer.

Robert began to speak in a quiet and assured voice. "What you SHOULD or COULD do with your life no longer matters. The only thing that matters, from this day forward, is what you MUST do."

He then drew a folded piece of paper from his back pocket and handed it to me.

I opened it carefully, and found a single word floating in the middle of the white page:

"Love."

A good day

Today I woke up to an email from Lupa telling me she will be editing my submission to the anthology "Engaging the Spirit World" in the next month. To quote her email: "Just from a first look, the essay overall is good stuff! I'm probably going to have you tease out some ideas in more detail, but this is a good first draft."

::happy gimp squee::

To tell the truth, I thought it was a crap first draft that would never even make it to the editing stage, and that would have been all my fault because I didn't give myself nearly enough time to do a thorough job. If she still likes it after the second read/editing stage, I will endeavor to make it the best it can be. Imagine me being published in both the science and spiritual venues. Wow.

This afternoon, I visited with my pulmonologist about my random sleeping episodes. His instinct was that I have sleep apnea which is causing me to not rest properly. He wanted to try to get me in to the sleep clinic to do an overnight sleep test, but he didn't think they could get me in before I have to go back to NO to do my General Exam. Then I brought up something my friend Lance (who also has SMA) mentioned to me a few months ago. His youngest sister (who also had SMA) died a few years back from hypercapnia-induced renal failure (at least, that was my take on what he told me). She didn't breathe deeply while asleep and didn't exhale enough carbon dioxide. The kidneys act to help "scrub" CO2 from the blood, and because it took doctors a long time to catch Lori's hypercapnia (excessive blood CO2 levels), her kidneys became too stressed and ultimately failed. I brought this up to Dr. R because I also breathe shallowly while asleep, and he said that he had been thinking about hypercapnia as well. So, we decided to skip the sleep test and go straight for a BiPAP (bilevel positive airway pressure) machine which would be recommended for correcting sleep apnea or hypercapnia, and I don't have to worry about stressing my poor stone-prone kidneys.

Afterwards, we went to Target. I got Christmas presents for Mom and my niece, and I got fun knee high socks and German Black Forest chocolates (dark chocolate squares with a hint of cherry) for myself.

Altogether, a day of accomplishments.

Endoscopy = weird acid trip

I finally had the esophageal-gastric-duodenal endoscope yesterday. Upon arrival, we had the usual drama of trying to get blood out and an I.V. in -- tell me, how I am I going to keep myself properly hydrated to make those tasks easier when I'm not allowed to have anything by mouth after midnight and you wait to stick needles in me until 2:00ish in the afternoon? Once veins were found, the processes were surprisingly easy, especially considering there wasn't a vein digger in the bunch. The RN got my I.V. on one smooth try, but the vein wouldn't give up any blood. That warranted a second stick on the inside of my left wrist (not too fond of sticks in the wrist), but it gave up about four milliliters of blood which was sufficient for the required tests using the new tiny tubes.

That all settled, I motored back to the surgery area (not easy with an I.V. in the back of my driving hand, but I didn't want to give up control and let someone push me) in my wheelchair since everyone agreed that doing the scope was feasible with me in my chair as opposed to transferring me to another chair to which my body is not accustomed. I sat for a few minutes in the surgery anteroom while they waited for my labs to come back -- not pregnant, hemoglobin and hematocrit low but better than last week, clotting time and blood thinness within parameters acceptable for performing an endoscope. The anesthesiologist, Ryan, gave me three meds in my I.V. and then we chatted a bit before me driving back to the scope room. As I started driving, I got a little lightheaded and felt like I could take a nap. Since I was pretty sure Ryan had said he wasn't giving me Versed until I was in the room and parked so as not to impair my driving ability, I asked him what he'd shot me full of. "Are you a little sleepy?" he asked. At my my affirmative reply, he said, "That's the Benadryl doing that. I haven't given you any happy, floaty drugs yet." Yeah, well, I was feeling pretty happy and floaty. I asked for and received a pillow on which to rest my I.V. hand, but it was traded after seconds for a less bulky warm blanket, and another warm blanket was draped around me. Mmmmmm, I love those warm blankets!

I was hooked to blood pressure and oxygen monitors, and an oxygen canula was placed in my nose. The surgeon came in, and I was given one milligram of Versed. I remember the anesthesiology intern injecting the Versed into my I.V., I remember Ryan saying they'd give me the Versed in milligram increments while watching my respiration (it depresses respiration, NOT COOL in someone such as myself with restrictive lung disease), and I remember Ryan telling me to tell the doctor what I'm working on at UNO. I think I started to, but . . .



. . . that's where everything got freaky.



Ryan says he's amazed I remember as much as I do of what happened next. I'll just start my recollection by reiterating the first thing I remember saying upon "waking up":

Whoa. I will never do LSD.

It seems that the drug I was given to put me in a relaxed state for the scope but wouldn't seriously depress my respiration (not at the dose/amount used) and would in fact also act as a bronchodilator was ketamine -- the stuff known as Special K, the stuff that acts like PCP. Typicallly, a patient given Versed before ketamine will not trip or will not remember that they tripped.

As we all know, I am not typical. I tripped. Boy, did I trip.

In front of me through it all, acting as a backdrop for my images, was what I later called "the kaleidoscope from hell," but I'm not sure why. It was an ever-revolving, 1960s-like psychedelic screen of red, orange, pink, blue, and green. It was frightening yet mesmerizing all at once. In front of that, doing a wonky dance to the soundtrack in my head or just sitting still and being menacing, was a disembodied tongue -- think of those Coke Zero commercials with the two redneck-sounding tongues and the French-sounding eyeball. That tongue was freaking my s--- out because it wasn't there to drink up Coke Zero. Then I felt like someone was using one of those drain snakes on my throat, turning it 'round and 'round. I wanted to tell the jerk who was doing it to stop, but of course I couldn't speak -- and to make matters worse, he wasn't picking up the mental STOP signals I was sending him via telepathy. Jerk. Then my mouth became a volcano, spewing forth not lava but endoscope lubricant. I would choke and then it would fly out like thrown rock and ash, or it would work up little by little and ooze out.

As I started to wake up, I have vague memories of the following:

-- Sitting my head up, blinking around the room, and saying, "Whoa. Whoa! I will never do LSD." Apparently, Ryan and the intern found this an extremely amusing first thing to say.

-- Sticking out my tongue and grunting for Ryan to wipe lubricant off my tongue. He obediently did so. Such a good anesthesiologist.

-- Giving the nurse instructions on how to release the clutches on my power chair. I don't know how intelligible I was (I kinda feel like I was mumbling) or how well I did giving instructions, but the clutches were off and I was in another room when I really became conscious.

-- Saying, "I heard music" (in my head during the trip), which reminded the staff to turn off the surgery room stereo. I wanted to ask the staff if a Poison song had played during my procedure because I had a Poison song stuck in my head the rest of the day.

-- Telling the nurse not to drive my feet into anything. I think someone told me he was a good driver, and I'm pretty sure I had my doubts.

Afterwards, I woke up fine and dandy, though with a very sore throat, obviously. It was a volcano, you know. My esophagus, tummy, and upper duodenum have been given a clean bill of health -- no ulcers, lesions, or polyps, just healthy pink tissue -- so I guess it was worth the trip. He he.

No go

The esophageal/gastric/duodenal endoscope I was supposed to have yesterday didn't happen because my blood was still too thin. Grrrrr! The surgeon's nurse called me today to say they're either going to get me into another surgeon or she has "another idea" to get me in next week.

Would someone please tell me why I allot two months for things when all my doctors wait to do everything in my last 2-3 weeks here? ::sigh::