I’ve been thinking about how to describe SCI difficulties with bowels without becoming too graphic.  Honestly, I don’t know if there’s a way.  I personally don’t have a problem with being graphic to explain these details.  Yet, I feel that Tom would… and, truly, I wouldn’t blame him at the least.

That being said, I don’t believe I’ll go into the ’step by step’ regarding bowel issues with a SCI.  I’ll just say that there is a routine involving a suppository that must be kept in order to avoid accidents.

The process that Tom and I go through has been nicknamed ‘Red Circle Night’ because I mark the scheduled days on the calendar with a red circle.  We also call it ‘Program’.

The act of ‘Red Circle Night’ is not enjoyable for Tom in any way.  He hates it.  With all of his being.  Actually, I don’t like it either.

I recall when Tom was in rehab down in Columbia, when the need came about for me to learn how to manage Tom’s program, I literally cried.  I was so upset that I was going to have to take on this task, knowing that Tom’s (and my) dignity was going to have to be set aside during these time periods.

Tom’s program lasts two hours on the nights we have it scheduled.  Its not a hands on process throughout those two hours.  Its a lot of timed intervals, watching the clock, and waiting.

We’ve just decided to change our previous schedule.  We used to do this process every third night.  Now we’ve decided to give a set schedule of Tuesday, Thursday and Sunday a whirl and see how it works out.

Not that you’re super interested, but I’ll keep you posted.

Not being a quadriplegic, I can’t honestly say, but I would assume the worst part of a spinal cord injury would be the lack of bowel and bladder control.

I feel that if these two functions could be returned to those with a SCI, their quality of life would increase dramatically.

Without going into too many details, for Tom’s privacy, I will say that these two functions basically control his life.

Lets touch on bladder issues today. (Not that we’ve had any major bladder issues recently, mind you.)

We’ve been through multiple catheter issues, some that actually involve having to make a trip to the ER.  I don’t blame those in the medical community for thinking that we’re crazy when we call an ambulance if Tom’s catheter isn’t working correctly.  Very few people realize that, although the catheter issue itself isn’t life threatening, the reactions that Tom’s body has to the catheter not functioning could be very harmful.

Autonomic Dysreflexia, or AD, is something that most quadriplegics hope they never encounter.  The quick and simple analogy I use to explain AD is something like this:

Ya know when ya stub your toe, and it hurts?  When stubbing your toe, a signal goes up your leg, through the spinal cord, to your brain.  Your brain says, ‘way to go, slick, and cuz you’re stupid enough to stub your toe, I’m gunna send this signal back down there to make you realize you’re an idiot’.  When the signal goes back down to your toe, it quickly stops off at the heart and tells it to pump harder to get blood down to the stubbed toe – cuz as far as it knows, the toe has been cut off and it needs to heal pronto.  The signal finishes its trip down to the toe and you holler out in pain.  The blood makes it down to the toe, realizes it doesn’t really need to get there so quickly, and slows back down to normal.

Tom’s spinal cord is damaged, remember?  So, if Tom stubs his toe, the message makes it to his brain, but the message is in German and Tom’s brain doesn’t understand German.  Tom’s brain kinda freaks out.  It knows from the urgency of the German speak that there is a problem, but the brain isn’t quite sure where its at… or how bad it is.  So, the brain sends out messages to several areas below Tom’s injury level, hoping that it finds the spot that the German toe was trying to address.  The signal stops at the heart also, and tells the heart to get beating cuz there’s a problem somewhere.  Heart rate goes up.  Blood pressure goes up.  As soon as the signal finally gets to the toe, the brain reacts and slows down the heart again – since the toe isn’t missing or anything. Problem eventually solved.

Now, imagine your full bladder. You know, the one where you dance around until you get to the bathroom? Now, imagine the line to the bathroom is soooo long that you’re just not gunna be able to make it there. But, there is no other option available to relieve yourself. You’re miserable, right? If you hold it in too long, your blood pressure will actually rise because its trying to clue your body in, telling it that there’s a biiiig problem and you need to fix it now.

If Tom’s biiiiig problem doesn’t get fixed promptly, his blood pressure rises too. But, Tom’s blood pressure doesn’t have the same ‘mellow out’ switch that our bodies have – its been damaged from the SCI. Until whatever the situation is that made Tom’s blood pressure rise is resolved, his BP can continue to rise.

It is plausible to have a heart attack or stroke from high blood pressure.

Do you see the crazy issue here?

If Tom’s catheter is messed up so badly that we have to go to the ER, we are going because the situation needs to be resolved as quickly as possible so Tom’s blood pressure doesn’t start shooting through the roof, putting him at risk for a stroke or heart attack. All this could happen just because he couldn’t tinkle… strange, huh?

Tomorrow – we’ll attempt a socially acceptable post regarding bowels…

I finally figured out how to take a picture of the mysterious roaming rash that has no known rhyme or reason to any aspect of it… that I can find, anyhow.

Wanna see?  Its not gross.  Its just a bumpy rash.  Which itches like absolute hell if I don’t notice it immediately and douse it with triamcinolone acetonide cream (whatever the heck that stuff is!!).

Anyhow – if you remember a couple posts back, the nurse practitioner I see asked me to try taking a photo of the rash so she could see it when its inflamed, or whatever it is.  Of course, I finally get the photo on a weekend.

Oh well.  I’ll see about stopping by the office on Monday.  Hopefully there will be no charge to show her a picture!  Maybe I’ll call and see if I can email it… sending an email shouldn’t cost any money, right?!

Rash photo = below the fold.

more…

When you go to the doctor because you have an intermittent rash that occurs in random locations on your body, it goes without saying that the rash will not be present at the time of your visit.

Then you must attempt to figure out how to describe the mysterious rash, which… if you knew how to describe it in great detail, you could of told the nurse over the phone the description and saved yourself the $100 bill for coming into the office.

After I suggested I take a picture of it the next time it pops up, of course it would show up on my right hand… making picture taking relatively impossible, since I’m right handed.

Cameras are not made for left-handed-only people, FYI.

I was prescribed a extra strength cortisone (I think) creme for the rash until I can photograph said rash and show the doctor exactly what it looks like.

Oh, and, of course, I didn’t go pick up the creme tonight.

So, of course, I am continuing to scar myself because the rash itches like craaaaaazy and I have no willpower when it comes to not scratching it.

I’d take a picture to show you, but most of the visible ‘damage’ is on my right hand.

I swear its Murphy’s Law.

I’m sure there will be a lot of posts going up about Bernie Mac’s death.  I am one of an unknown number that are flabbergasted and blindsided by this death.  50 years old is way to young, in my opinion.

And, as upsetting this situation is, I am more in shock.

I sit here, slightly shaken, because Tom has had pneumonia several times after becoming a quadriplegic.

There was one long stay that the pneumonia was so severe that the doctors wanted to put Tom on a respirator, since it had compromised his ability to breathe that intensely.  Tom refused the respirator, after having a horrible experience with one immediately after his initial injury.  When Tom’s heath had improved significantly during that stay, the doctors shook their heads with relief and whispered of close calls.

Tom battled through each time.  He’s been very lucky, all things considering.

And, although I knew that pneumonia could be potentially deadly, I never feared that Tom would not recover.  There were a couple times that I really should of been worried, though.  I don’t know if it was me being naive to the severity of the situation, or if I just never had any doubt.

Reading about Bernie Mac’s death brings me right back to all those hospital stays for pneumonia … and how lucky Tom and I are to have been able to go home.

I know I haven’t updated in some time.  And, I’m sure that some of you probably thought I had fallen off the face of the Earth.

Alas, you all can relax.  I am alive.

Not only am I alive, I am doing quite well, thankfully.

The anti-anxiety medication is working wonders, although I still have minor moments every now and again.  Of course, they are very manageable, thankfully.  It hasn’t been the full month yet since I started the Paxil, either.

I did go through quite the array of side effects.  None were horribly miserable, and none lasted for more than 36 hours, I’d say.

I experienced some odd effects, though.  Like, I felt that my eyes were opened extra special wide for a couple days.  I felt the need to massage my forehead to relax my eyebrows.  Interesting.

I also had a lack of appetite.  I had a little dizziness, a wave a nausea and some drowsiness.  None of these were at the same time, mind you.  I haven’t noticed the ten pound weight gain that is typical from starting this medication, which hopefully I won’t… I don’t need any help on that front, thankyaverymuch.

I have had some positive things occur since starting the medication, too.

My motivation level has increased.  I used to struggle to do minor tasks – I would say that I’m a procrastinator.  I suppose I can understand how that may of been anxiety related in the past, but it never crossed my mind before.

Simple tasks, like vacuuming or making an appointment to get the car inspected, would go long periods without being accomplished until it was completely necessary.  I used to get so caught up in the ripple affect of ‘everything that would have to be done after that task’ that I would wear myself out before I had even started.

Now, I look at the shower and think, “That needs to be cleaned.”

So, I clean it.

Like, immediately.

And, its done.

Ta-da.

Or, I think that maybe I should clean out my car.

And I do.

Quickly and easily.

(I definitely still put things off that I could do, by the way.  But, its not because I’m thinking 23498 steps ahead and getting overwhelmed.  Its simply because I don’t wanna do them, by golly.)

Its kind of a strange world, this one I live in. But, I think I like it.

You know that I had been under-diagnosing my anxiety for probably over six months.  Maybe even closer to 3/4 a year or so.

I was blaming all of this crappy feeling on allergies or sinus issues.  Which, in my defense, I do have – but not nearly as severely as I was thinking.

I kept saying that my allergies were keeping me from breathing correctly.

Now I realize its because I am so physically tense, my lungs are constricted.

I had panic attacks.  There were moments where it was so intense that I would call my best friend or my mom and cry to them to take me to the hospital because I needed a trained professional to tell me that I wasn’t really dying… so the doctor could confirm that I was only having a panic attack.  Of course, talking to my best friend or my mom normally eased the attack enough that I could work my way down from the worst of it in a couple of hours without the visit to the ER.

But, I never quite grasped the fact that I have anxiety all.the.time.

Already, I can look back to several incidents and say, “Oh, duh, Sheila.”

You’d almost think that knowing you have anxiety would make it easier to control.  Its almost a double edged sword, it makes me more anxious at times.  I can’t wait for these anti-anxiety medications to take affect.

I spent most of my day having a conversation with myself, reminding me that these intense feelings I have are on their way out of here – these pills will work their magic soon.  I have to remind myself to exhale completely… not hold my breath.  I have to move my shoulders around so the muscles will loosen, then my shoulders will drop… amazing how they’re not supposed to be at ear level regularly, huh?

On the rare occasion that I get my muscles to truly relax, they throb like they’ve been worked out harder than every before.  I have to remember that the throbbing is okay… that’ll lessen over time, otherwise I can work myself into a panic about fake symptoms of health issues that I do not have.

I’m sitting here, shaking my head at myself.  Why did I allow myself to deal with this the hard way for so long?  Ignoring the problem does not make it go away, by the way.

How did I not know how bad it was?

Yes, I am aware that there are temporary medications (Valium or Klonipin are a couple options) that could help me until the daily medications have reached their effectiveness.  But, I’d prefer to not go that route – although I am keeping the option open.

I can make it a month.

Heck, I’ve already dealt with this for how long?  28 more days should be nothing, right?