One Step Forward, Two Steps Back....Again.

All Christmas Eve, I mourned the loss of my body, I was sullen and pretended to act like nothing was wrong.  I was inconsolable, not a wreck, but I just wanted to be alone.  I didn't want anyone to cheer me up to remind me of how far I've come, and how much I've done.  I am doing more than I ever thought, but it's my time to mourn.  I don't even celebrate my 2nd birthday.  :/

When Christmas day rolled around I perked right up and remembered that I was alive and thriving!  I knew I would, and only wanted to be allowed to have my moment alone.  In the past year, I've seen weddings galore and now I'm seeing a gaggle of babies make their way into this world.  I'm constantly forced to be happy.  I really am, but there's always this little voice that whispers that some of these wonderful life events would not be for me.  I believe in love stories, happy endings and know that the road I travel will have an amazing end, but every now and again, I'm just a girl that dreams of a princess life. 

What am I willing to do to rectify the things that, to me, appear to be hindering my progression?  Am I being diligent to the willingness to change?  I can be apathetic but pray desparately to not be.  I pray that the amazing people that surround me will show me that I can have what they have if I don't give up.  Truth be told, my weight is an extreme hindrance to my life.  Transferring, bodily functions, self-esteem, and many other obstacles would be much easier or made obsolete should I shed this weight.  I'm setting small goals and will try to attempt those.....again.  

In other news.

FUCK FUCK FUCK FUCK!!!!  I've been in the mood to let stuff like that out.  I'm frustrated and am actively seeking a sound mine.  I breathe, I write, I'm sleeping more, I'm back to working out.....then what?

I left the hospital on IV antibiotics, a 6 week course, with a sidekick of Levaquin tablets, an oral antibiotic taken for 32 days straight.  Can you say "wreaking havoc on the system"?  After blood tests I realized that the wound on the lower side of my hip (a Stage 3 pressure sore - not deep enough to reach bone, but pretty darn close) was resistant to the oral antibiotic.  I was given a new one that tasted like acid in the mouth,
Metronidazole.  

Once that was done I almost skipped for joy only to have my Infectious Disease doctor call me and dash my hopes of a PICC line-free arm.  My C-reactive protein, which is a protein found in the blood, was elevated, indicating that there was inflammation.  Increased numbers in conjunction with elevated white blood cell counts happen to be indicative of something bad, more infection.

An MRI on Monday confirmed that I had e-coli in my right pelvis.  It had spread to the left pelvic area. 

The good news:  The bacteria was isolated, located, and is easily treated.

The not so good news:  I have to have IV antibiotics for an additional 6 weeks which will continue to wreak havoc on my body.  (I've got pro-biotics on hand to help the gut do it's thing.)

This is the only way to treat bone infection.  The deadline to be free of antibiotics continues to distance itself.  Until then I just take it one day at a time.  I make time to laugh, breathe, write, and most importantly, PRAY.

 

Medically Necessary

I’m feeling down, unnecessary, hence the new post.  This is therapy.  Regurgitating my feelings on “paper” helps me sort myself out.  The holidays arrive like a gust of wind and remind me that my 4-year anniversary is around the corner.  The most special holiday, Christmas, is a token of my greatest joy and my greatest sadness.  (though, the sadness has served as many positive things)

 

Recovery from Spinal Cord Injury has become a daily way of life, kind of ho-hum.  Mood swings make things either bearable or excruciatingly difficult to deal with.  It’s not always possible to muster the mental strength to get up and do stuff, but that fiercely independent girl rips the covers off in the morning and forces me out of bed.  I’ve learned to fake a feeling and act it out until I’ve achieved the end goal.  For instance, I’m not a gym rat or physical exercise enthusiast, but I’ll do it and feel better afterwards.  Positive results encourage positive behavior and co-behavior, such as healthier eating and taking time to meditate/breathe.

Physical pain has increased to the point where I’ve requested a prescription for medication, me, a girl that doesn’t even take Tylenol .   I was recently hospitalized for 10 days for semi-elective surgery (while missing out on Halloween :( ).  I wore the wrong shoes about a year ago which caused pressure points, which resulted in pressure sores that bruised, blistered, and eventually opened up.  After almost a year of wound care my doctor suggested a radical procedure that would shave down the heel bone (calcaneus bone) by about 10% so that he could sew the skin closed and prevent similar recurring events.   

While in surgery it was discovered that I had indeed acquired a bone infection bilaterally and ended up on some of the strongest I.V. antibiotics.  It was also necessary to shave the bone even further due to infection, about 40-50%.   

I have to add a side note.  I have a really nice doctor.  In anticipation of my boredom while being hospitalized he brought me magazines, cough drops, and a Sudoku book.

(Pause for an idiosyncratic moment.  I just looked at my computer clock and notice it was 4:18.  That’s the date of my birth and I always feel better when I see that number pop up somewhere.  It makes me feel like I’m important and have things to accomplish.  Maybe it’s just residual OCD, lol, but I always feel better.)

I’m now on leave for a total of 8 weeks.  A PICC line was inserted into my arm to accommodate I.V. antibiotics and blood draws that have been ordered until December.  My primary physician also put me on 2 other medications, one to lower cholesterol, as he wants my numbers medically low, and one for blood pressure which is actually being used to prevent diabetic scarring on my kidneys.  Including the insulin and other medications I’m already on, this has proven to be very hard on my body.   Sometimes I can’t tell whether I’m coming or going and can’t wait to be rid of this regimen though I will always be thankful for technology and science as they ease my routine.  

I concurrently have a pressure sore under my right leg, where the ischium tuberosity is located (read: where the thigh meets the butt cheek), also due to an improper shoe that displaced pressure on my body.  I was sent home with a wound vac.  It’s a cool little device that absorbs/suctions out seepage and blood while simultaneously drawing the tissue closer together.  This all works cohesively to speed up healing.  I’m like a cyborg with all kinds of things attached to me and need to monitor myself at all times so I don’t accidentally pull out a line, cord.  Bah!

Today, I had a random moment in which I cried for a good 10 minutes.  Pity parties have been reduced to 10 minute periods and are less frequent.  As a matter of fact I have less pity on people having prolonged pity parties.  Instead of feeding into their woes, I have begun agreeing that things suck, then offer suggestions to get them back from the dark side. :)

So that’s where I’m at right now, just learning how to get stronger, learning that I need to answer the voice inside telling me to use it more, and learning how to further heal spiritually, mentally, and physically.

A quick med tip on wound care.  

If you’re on I.V. Vancomycin (hopefully, not), for prolonged periods of time, it’s normal to experience lower back pain.  Drink more water.

If you’re healing a wound of any type, take:

• Zinc Sulfate (hospital dose is 220 mg) once a day
• Ester C twice a day (Ester C is less acidic than regular vitamin C supplements)
• And be sure to ingest about 80 gm of protein.

A wound takes 90 days to heal from start to finish, so be patient.

Any other comments, remedies, or suggestions are welcome.  Leave them in the comments.

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Change...

True, change is a process, a journey, but why is it so emotional?  Dumb question.  I've recently made several life choices that have filled in the wedges of my foundation, they've stabilized me.  I've arrived to a place where change is the only option left.

I'm slowly losing weight, have slowed down on fast food, opting for better options and have purchased the Nutribullet (which I LOVE) and have been juicing/extracting more with fruits and veggies.  My workouts have increased to a minimum of 4 days a week, 2 of which are with an amazing therapist.

I still have vices, I haven't given up smoking, but I rarely drink, maybe once a month??? I dunno.  The power of positivity is swelling up in me and I can see the great things that lie ahead of me.  I choose to let God do what He will do by not focusing on what hasn't come to pass yet. ( Thanks FB random update post from someone I don't know, lol )  Timing is everything, right?

So I have mixed emotions, fear of the unknown, excitement, sadness that I feel like I alone make this choice knowing I will be the recipient of all consequences and blessings (said the commitment-phobe).  Can I handle the future?  Of course I can.  Will I need help, support, love, critique?  Of course I will.  But what a lucky girl am I that I'm surrounded by amazing people and a wealth of resources.

I deal with an increasing amount of loneliness and choose not to share verbally with people.  It comes and goes but it does have some tremendous moments.  I'm loneliest in a group of people but specifically when around someone that I have deep feelings for.  Life has taught me to not rush things, to not screw up a good thing so I enjoy the life and relationships I have without rocking the boat.  

I revert to prayer, exercise, and a good diet to keep myself in stasis, to keep momentum going, and to keep focus on all the change that will inevitably come.

P.M.S.

P.M.S.

Premenstrual Syndrome: PMS is a disorder characterized by a set of hormonal changes that trigger disruptive symptoms in a significant number of women for up to two weeks prior to menstruation. 

Really? 2 weeks of insanity?  lol
 
To me, P.M.S. means (P)lease (M)ake it (S)top,

I guess we all feel that way, right?  Regardless of situations, abilities, (Diff)abilities, sometimes we want to cover our mouth with one hand and raise our other hand to signal to the ride operator that we'd like to get off the ride.  Fortunately that's not the case.  Every situation and moment has grown me and taught me about who I am, who I am supposed to be and in return I've paid it forward and have been rewarded with an amazing support system and life where I've been given friends, mentors, heroes, athletes, survivors....tour guides to this thing called life. 

I have my moments.  The other day I just wanted to break something and haven't yet. 3 1/2 years and counting.  Karma means if I break it, I clean it up and I can't destroy things I love.  I even want to break relationships so that I can isolate myself and have room to breathe.  I still live in a room without privacy and as an adult that would trade her kingdom for privacy that's pretty horrific.  I am fortunate to have a power chair that acts as my vehicle right now and I'm pretty good about getting around by bus.  I am able to get to the market, the movie theater, my gym, and other places if I plan it right.


One morning, I'm unsure of whether it was my blood sugar being out of whack (type I diabetes sucks), hormone imbalances (that are worsening with no end in sight), or just sheer frustration, my mom had left and was supposed to be back to help me out a bit and she went missing on one of her shopping trips.  She's older now and takes a lot longer to do basic things.  She left her phone at home because it was dead and I was stuck in bed with a catheter leak.  Ugh, another wonderful side effect of paralysis and a body which I'm still struggling to understand.  So I just started yelling.  The house was empty for once and I was able to just release.  How freeing that was.  Fast forward mom got home and we got into it a bit.  

She agreed to change my catheter (done monthly or when I feel a UTI has taken over) and I asked her to wash her hands.  She was immediately offended and got mad at me for asking her.  I snapped.  How am I supposed to ask a stranger and not my mom.  She couldn't understand.


The metal reacher was available so I grabbed it and beat my poor lamp with all my might repeatedly.  That wasn't good enough.  I finally got pissed off at my body and turned the reacher on to my legs.  I beat them till they were red/bruised.  They didn't care.  I didn't care.  I wanted off the ride.  I cooled off and peace was eventually restored.  The bruises are gone,


Nothing is expected of me now but to live, survive, and be happy.  I think we should do our best to enable others to be happy as well. (in a legal way, lol).

Anything and Nothing.

I'm in my head again.  I over think things, play out a bunch of scenarios that haven't happened (yet???), and am in a constant flux of positive and negative mood swings.  argh.  I had a tiff with my sister-in-law about her using my printer and jamming it without fixing it without my permission ....read as invading my personal space when I already feel that I don't have privacy.  When confronted, there wasn't a tinge of remorse which made it all the more irritating.  Kind of like when someone apologizes and says, "I"m sorry....YOU feel that way".  

We haven't really spoken and as a side effect, my brother hasn't spoken to me either.  Not because of ill will but because it's awkward around here.  I've never really told her much but I had to draw the line when she used my computer without asking.  This is my sanctuary, where I conduct business, where I write down moments like this....personal stuff.  I have never experienced having a little sister that would take your stuff without asking and am not accustom to, nor do I care to become comfortable with this kind of thing.  

During the course of life rehabilitation I've had to learn how to fight for my rights, use my voice, be proactive,  and be a gentleman while doing so.  Everyone tells me to get over it, and I am...slowly.  I'm reminded that we don't choose our family, but I'd rather be silent than say something I regret.  I am no good at apologies. 

In the meantime, all the sadness I feel of having my brother not talk to me (similar to when we would fight before my accident) irritates the crap out of me.   I ask him for stuff from the kitchen and he brings it down without saying a thing, anything, nothing.  There's no eye contact.  He delights in talking to everyone else, goes out with his friends and has stopped asking me to go out.  He plans nothing with me and it makes me feel even more invisible.  Meh.  I don't even get a "God bless you" after sneezing or a "Good night, love you" before he goes to sleep.  Maybe he thinks I'm mad at him...???...

Socially, even in a group that embraces all due to it being a very exclusive group of people (wheelchair users) you go through the same social ringer as with any other group comprised of human beings.  Cliques form, and you are either "in" or you're "out".  There's no ill will behind it, but socially, it just happens.  Able-bodied friends (close friends) understand that I need a little bit of time and notice before going out since I have to take Access Services everywhere.  RSVPs are made a day ahead so a "head's up" is always needed.  I am extremely grateful for the close group of friends I have but still feel alone.  I feel myself withdrawing again and am staring to isolate myself.  I love going to the movies by myself, shopping by myself, and talking to myself, j/k.   And truth be told, I'm giving up on finding love and will just wait for it to happen when the moment's right.

My best friend U. is busy with a beautiful new baby boy, my other best friend J is usually working and will be busy with her niece and nephews for the next 3 months, mom is getting older and can't do as much with me, and other friends are busy with life in general.   I've picked up smoking again out of boredom and sadness.  Like all other vices, it's a means of control.  So I'm dealing with life on a moment to moment basis. 

My brother and his wife will be leaving for Hawaii tomorrow for her brother's wedding and I hate the idea of not clearing the air before they leave.  Never leave things undone, right?  sigh.  This is the rough patch, the times that make the good days, great.

My Mum 2012

 It's Mother's Day Sunday.  I always miss my mom in the mornings as she dashes off to church for 7:00 a.m. mass and then to work at 9:30 a.m.  I spend Sunday mornings catching up on sleep lost during the week.  


My bladder has been trained to be emptied every 3-4 hours.  If I oversleep it could be a little messy and sure enough I overslept without emptying my bladder ( I manually empty my bladder through an indwelling foley catheter that's never removed - not fun ).  Even with the medicine I take( which prevents the bladder from having spasms) I woke up in a mini puddle of urine.  sigh....and Sundays when I wake up, I'm alone.  

Getting cleaned up and dressed is more difficult, if not tricky.  Today I managed to get cleaned up and out of bed in 45 minutes.  I hadn't planned anything tonight because mom's pretty tired when she gets home and I don't need a day to celebrate Mother's Day because she's a mom everyday. RIGHT?  Anywhoooo I decided to get her flowers and some chocolates that she fancies.

The process of getting out is ridiculous because so much time is wasted dropping things, picking them up, finding my bag, phone, the garage opener ( my entry point ) and making sure that I look presentable when I get out.

As I'm about to leave, I make sure to use the bathroom (read as emptying my bladder) and thanks to Murphy's Law the plug in the end of the catheter pops out before I'm ready and a bit of urine leaks out.  At this point I refused to spend another 45 minutes getting in and out of bed to change so I grab some towels, spot clean and head out with a wet spot on my right thigh.  I figure the valley heat and wind should dry me off in no time.  Sorry if that's a little gross, but after doing it so many times, I absolutely refused!


After checking out the last-minute Mother's Day flower selections, I managed to grab the last 2 pretty bunches of orchids, a simple tall square glass vase from the Goodwill next door and assembled everything into something presentable.   A little creativity, a Goodwill find, and chocolates make for a nice little "Welcome Home" / "Happy Mother's Day!" gift when you get home.  She'll be home in 1 hour and can't wait to give it to her.  She loves me unconditionally even though I'm a handful, lets me rant and cry during the hard days and celebrates my victories with me.  She is present and she is love.  She's my mom and I hope that if God ever grants me the title of "Mom" that I will be just as amazing.  I love you mom!

The Show Must Go On

Today I'm running on 2 hours of sleep.  The burden of filing taxes has been lifted and I've begun selling on eBay again at a slower pace.  I now do it as a hobby and not as a means to support myself (as much) or to offset costs for medical supplies.  I've become a gym rat again and LOVE IT!  The multitude of support from everyone and my current medical needs have ushered me into a more productive, fitter life.  

Struggles still exist, whether they be with love, self image, healthier lifestyle choices, or making better emotional choices for myself.  I've managed to catch up with a lot of old friends as well as participate in the lives of current friends that are also moving forward.  Wedding mania last year has turned into baby mania this year, lol.  It's a testament to the age I've arrived at.  The 30-somethings are doing what the 20-somethings did decades ago.

Over the last 3 years of accommodating and adjusting to doing everything in a wheelchair, I've continued to evolve and triumph over my SCI (Spinal Cord Injury).  Being more active with non-profit organizations and other exciting projects have brought me to stasis, to a point in my life where I feel like I can ask the question again, "What's next?".

I feel like I've almost conquered the 5 stages of accepting change, similar to the steps of accepting death/loss.   Similar stages have been referred to as the Kübler-Ross model, The Five Stages of Dying, The Five Stages of Grief, The Five Stages of Loss, The Five Stages of Coping with Dying, The Five Stages of Coping with Grief or The Five Stages of Coping with Loss.

http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model

• Denial
• Anger
• Bargaining
• Depression
• Acceptance

At times I feel that I've come to acceptance, but then I feel like I revert to the prior 4 steps at random moments.  Depression brings about feelings of suicide, giving up, letting go...and all have frequented my mind aggressively.  At some point I made a deal with my mom that I wouldn't kill myself until she died because she didn't deserve to suffer (almost) losing a child twice.  We even agreed to shop for burial options together.

Going back to exercise, I find that exercise (as promised by my therapist) chemically alleviates many if not all of these feelings and I zoom back to stage 5, Acceptance.  No meds needed (as if I didn't have enough to think about).

While reading previous posts, I see how far I've come and as always God shows up on time.  Yesterday I decided to read the Charles Spurgeon devotional that landed in my Yahoo Inbox and you guessed it, it had to do with suicide.  http://www.heartlight.org/spurgeon/0502-am.html

For those who are religious, suicide is taboo, frowned upon but no one ever bothers to explain why.  The reading talks about these exact moments in which we want to give up and (for Christians) go home to be with the Lord in order to alleviate current suffering.  Do we really want to be with the Lord and experience rest or do we simply want to run from the trials and (customary) tribulations?  Pain and suffering are temporary, wouldn't you agree?  When I see someone's face light up when given great news or watch someone rejoice when life is favorable, I empathize and rejoice with them!  I live for these moments and wouldn't miss them for the world.  A great example is when two of my closest girlfriends found out that they were having their 1st babies 2 months apart, I couldn't have been happier and jumped on the bandwagon when it came to planning their baby showers.

"...Now it is quite right to desire to depart if we can do it in the same spirit that Paul did, because to be with Christ is far better, but the wish to escape from trouble is a selfish one. Rather let your care and wish be to glorify God by your life here as long as he pleases, even though it be in the midst of toil, and conflict, and suffering, and leave him to say when "it is enough."...

"I pray not that thou shouldst take them out of the world."

John 17:15

This summed it up for me.  I know not everyone feels the same way, but I can agree that it is a little selfish to wish to leave this earth. I will continue to struggle, fall, and get up to fight the good fight until the Lord calls me home and while traveling down the road of life will learn to enjoy the journey in a fuller capacity.

Dick Clark died on my birthday and was laid to rest today.  He was a client of my therapist's for many years and inspired many as he continued to work after his stroke in 2004.  He told USA TODAY in an e-mail interview in December, "I'm encouraged by the many people who tell me I'm an inspiration to them." He added that he tried to keep a positive attitude "and attack every day with the thought things are going to get better."

In the undying words of the legacy known as Dick Clark, may he rest in peace,

"The Show Must Go On"

 http://life.time.com/culture/dick-clark-an-american-life/#2

and now???

There's so much to write about and I've been busy with constant life adaptations, work, eBay, doing (semi) business taxes for the first time, working out, getting involved with more non-profit work, and getting back to the night life, though not like I used to.

I have a few blogs started but wondered if there was something you wanted to know specifically.  No holds barred and anything goes.  Only close friends & family on here, so if there's anything you'd like to know, comment on this post. :)  xoxo