“You are inflexible!”

I have been asked several times in recent months about my seeming inflexibility with spontaneous activities.  I haven’t had a good response because it is something that feels complicated to explain.

The simple answer is that I have only a certain amount of energy per day, and sometimes that is all used up by noon.  If I have plans to do something later in the day, then I try to conserve it.  If there isn’t anything planned, then I continue to go until the energy is gone.  Sometimes I keep going anyway, but I am working hard at not doing that more.

It is much like how we drive our cars.  We have a certain distance we can go on a full tank of gas.  Once that gas is gone, the car stops until we put more gas in it.  Quality sleep is my gas station.

In the weeks since my freak out, I have been tracking my steps with a pedometer to see if that is a good measure for me of how much is too much.  It so far appears to be valuable information.

It is really easy to get the goal on most pedometers of 10,000 steps per day.  That is not my goal because I soon realized that anything more than 6,500 steps makes for wobbly legs.  The clonus is worse, balance is terrible, the calves and tiny feet muscles are tighter and painful, and it is time to slow things down for the day.

I can go over my steps so easily that I did it on a day when I spent several hours sitting on a couch at my dad’s house watching football with at least an hour of time sitting in a car.  I was shocked to see the step count after going to the grocery store and pharmacy one day, and even more shocked on laundry and vacuuming days.

The step count is important because of the amount of conscious energy that I expend with each step.  Each time my legs lift off the ground, I am consciously aware of how far they are off the ground and where they land beneath me.  The walker alleviates some of that because at least I am pushing off it to get my legs and feet up, but if the legs are moving and I stop paying attention, the walker and I have accidents.

A fair part of that energy is used up fairly quickly on even a short dog walk, which is how my days begin.  Duke and I are on pace with our walks because he too has a limited distance before his hind legs give out, so I share the responsibility for Ruby who needs a little longer of a walk.

Prior to the day the left leg stopped walking along with my right, I had done my best to take Ruby farther every day after we dropped Duke back off for over a month.  I was also walking distances that were quite honestly overkill just because I felt like I could at the time.

But let me get back to the question of my perceived inflexibility.  It isn’t a matter of flexibility as much as it is about rationing out my energy the best I can.  Sometimes a night of sleep isn’t enough to refill my figurative gas tank, so I have to save what I have for work, responsibilities and daily tasks.

If nothing is left, that is when it seems I am being inflexible and even go so far as to stop planning any activities until I feel like I have had enough quality sleep to allow for it.

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Update About ME!

This may be the most detailed update about me you have gotten in a while.  As I was struggling with the continued on and off burning nerve pain prior to Amore’s heart failure, I lost focus on some of the other reasons I made the decision to remove the pump.

If I lose focus or focus in too intensely on one thing, I completely forget about everything else that makes up the bigger picture.

Many things are different now that there is no longer baclofen going into my spinal fluid, and no longer a pump and catheter tubing throughout my torso.

What I noticed the fastest was the improvement in my bladder function.  My bladder wasn’t contracting well and was causing urinary retention for almost as long as I had the Medtronic pump.  I didn’t have the same problem with the Codman, which is why it never occurred to me that it was related.

I put off going to the urologist because I kept having to go to pain management to try to get help with the pain.  The burning nerve pain was my primary focus for most of the first year and a half I had the Medtronic.

When I finally went for urologic testing, I ended up having to take two different medications to be able to pee. Almost as soon as we started decreasing the intrathecal baclofen, I started needing less of the medication.  It has been a few weeks since I have taken any of the medications for that.

Since my pain has decreased and my body is now adjusted to no baclofen, my blood pressure is also lowering.  My primary doctor and I are in the process of removing the blood pressure medication altogether.

The incidence of vertigo has also decreased considerably.  There was hardly a day where I was not having episodes.  I even went to physical therapy to try to help with it, but her exercises were making my visual migraines worse.  I didn’t have problems with vertigo at all until the removal of the Codman and then getting the Medtronic baclofen pump.

Once I started looking into the urinary retention as a side effect of baclofen, I also noticed vertigo as another listed potential problem.  I wondered if that might also improve, and so far it has.

As my back incision continues to heal, it appears the nerve pain is more off than on.  Last week, I went four and ½ days before getting it again.  When it is coming back, it is often less intense than it was.  There are certain positions that seem to stretch that lumbar area and trigger it, but I have gotten overheated lately and it did not trigger it.

I need the cane to walk, but am walking.  I need the cane to take steps up and down, but can take steps up and down.  I can drive short distances.  If I go where the stoplights are long or there is a lot of traffic, my leg starts to become uncooperative.

What else am I forgetting?!

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The Anti-Fan Club Leader Resigns

I have never been a fan of inconsistency, unpredictability and the like.  In fact, I started the anti-fan club for such things very early in my life.  Perhaps that is why the universe has tried to teach me to tolerate ambiguity over and over again.

At this point in my life, I know I do one or two levels better than just tolerating the inconsistency and unpredictability that is a given as I live this life.

I was pleased with my ability to cope with it, until now.

Now, I am sure I can do better.  The unpredictability and unmanageability of the nerve pain in my torso is the latest teachable moment.  While I may not show it all the time when it has happened recently, I can assure you that inside, it unglues me.

Unpredictable collaboration (detail) (Photo credit: Topsy@Waygood)

Most of that is because I am the anti-fan club leader and automatically become frustrated, agitated and angry that I have no control over it.

When the torso burning starts back up, it is as  if each instance of unpredictability and lack of control gets rolled up into the feelings I have about it.  I hadn’t really put all of it together until now.

The negative feelings get directed at the pain because I don’t know what makes it happen and I cannot figure it out.  The same pattern emerged as I was slowly losing control over my mobility at the onset of my illness.  That definitely wasn’t helpful then.

Yes, understanding it is my way of controlling some aspect of what is otherwise uncontrollable.  So is shifting my perception of whatever it is.  It is how I empower myself and take charge of my life and my health. Now that I understand that there is more old stuff to let go of, I can work on doing just that.

As I let go of it, I can stop coming unglued, relinquish my anti-fan club leader position, and stop attaching it to the pain.  I can’t cooperate or better understand the pain with all of this other crap in the way.

Cars, Dogs and Happy Faces

While the stitches snag saga awaits insurance authorization, I am plugging right along with my rehab plan with band-aids in place over my incisions.  Yesterday, I drove me and Duke to work at the Homeless Emergency Project (HEP).  I also drove us home safely after walking around the campus there.

{insert big cheesy grin here}

At no point did my torso burn while we were there, and I couldn’t have been more grateful for that.  The incisions pulled at times, but that isn’t as distracting to me during a conversation as the nerve pain.

Duke and I both had a great day that made me almost sad when it was time to go home.  I lingered a while longer trying to capture the pain-free, awesome combination Duke and I made while we were there.

{insert a very happy Duke face here}

In addition to having the suture issue Tuesday, I also drove.  I drove both in the morning to my doctor, and again later in the day to see how that was.  It was ok.  It was safe.  I am more comfortable doing it, and drove an extra block on the way home with Duke.

Instead of getting home and having to lie on ice packs, I came home and did the work I needed to do for my online students.  That is so awesome to me!  I have no words for it, actually.

{insert a smiling, relieved face here}

It is really a challenge when I feel this good not to overdo it in some way.  That is what happened last Wednesday after HEP, but not this time.  I consider driving my consolation prize for not picking up babies or heavy things and having to baby my incisions until I can get the suture situation resolved.

I am doing my pool workout today, or at least a modified version of it.  And spending time with some friends I don’t get to see as much as I would like while doing it!

Too much good stuff for you today?  I prefer it that way.  😉

Talk about a snag…

When the doctor removed my intrathecal pump, he stitched under the skin in an effort to minimize scarring.  On top of that, he put these steri-strips and I was told to let those fall off on their own for cosmetic purposes.

I didn’t ask for any of that because two large scars on either side of my belly button will still be there either way.

Besides that, I have walked around with a titanium bulge in my abdomen since 2007, so I didn’t really care anymore about that.

When the first steri-strip came off on its own on the left side of my stomach’s incision, Mr. Awesome and I noticed there was a suture sticking out.  I called, talked to the nurse.  She said she would talk to the doctor and call me back.  No call back, so I presumed there was nothing to be concerned about.

Yesterday, I drove myself to see my primary care doctor for a regular checkup, and he removed the other steri-strips.  He asked if I wanted him to and I said yes because I wasn’t pulling them off.  I was afraid there would be more sutures sticking out.

Since overdoing it last week, there has been a pulling (at first a ripping) sensation that is very uncomfortable with all three of the incision sites.  It was more the front two incisions than the back one. I just figured it was skin tightening and healing, although it all just felt icky to me.

Turns out, that sensation is the sutures pulling as some are under the skin, and some are over the skin—all connected.  My primary wouldn’t do anything with them because he doesn’t know what kind of stitching the other doctor used and directed me back to the doctor’s office.

I didn’t want to and told him as much.  I hoped to be finished with the whole pain management scene once I was released.

After several phone conversations with medical assistants and schedulers, I was given an appointment for a week from yesterday.  Seriously, I have to wait a week because they need insurance authorization before I can go in to see them.

My primary care doctor said to keep them covered when I am out an about so they don’t snag on anything.  He said it shouldn’t hurt them to do my pool stuff.

Meanwhile, I had been feeling the same sort of tugging on my back incision, which looks the best of all of them.  All of the steri-strips fell off on their own back there first and there were only two scabs—one at the top and one at the bottom of the incision.  The top scab came off, and guess what I felt back there?

A suture sticking out.  Yes, another one.  Are you kidding me?  I covered it with a band-aid and went about grading my students’ assignments.

I am going on with my rehabilitation plan while I await insurance authorization to see the doctor.  Talk about a snag.

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In the presence of pain…

(Photo credit: camera bag)

It was a cloudless, brilliantly blue sky that only a fall day can deliver.

Before I know it there is darkness.  I can see the heavy clouds cover the blue of the sky just as a window shade slowly closes out the sun light from the outside.

It is a darkness with a chill that I can only equate to an impending snowstorm up north.  It is all-consuming and I feel it’s heaviness through my entire body.

For hours, I was effortlessly cracking jokes, laughing heartily at them, and using very little energy to maintain perspective.  And then I wasn’t.  My entire affect shifted.  I was using more energy to smile, make jokes and to be pleasant.

My torso was burning again.

Having the breaks from the nerve pain that encompasses my entire torso is making me more aware of just how much of a difference it makes in my demeanor with and without it.

I love to smile.  I love to joke around.  I love to laugh.  I am a pleasant person and I like that.

The presence of pain doesn’t change any of that at the core, but it certainly makes me have to work harder to do all of it.  I could almost feel the energy drain out of me when it started and I realized it wasn’t just fleeting burning.  I feel uninspired, unmotivated and agitated.

Duke and I had a great time at the Homeless Emergency Project prior to the dark blanket of clouds closing in.  My torso started burning about 45 minutes before we planned to leave, so we made the best of that time just the same.

These breaks from the pain also make me wonder how in the world I did everything I did when it was constant and unrelenting.

If you have ever had any kind of pain that didn’t go away, I am sure you understand what the presence of pain takes away.

Not only did it zap my energy, but it also zapped my ability to focus and concentrate.  It made joking about something like the government being closed on Columbus Day turn into a tirade about having voted for any of our elected officials.  It takes positives and turns them into negatives with no real ability to realize it happened.

It is as if dark clouds are hovering above with the threat of bad weather when the nerve pain starts again.  I need stillness and isolation to find my perspective.  I know there is no blizzard to come, but I need solitude to remember that the new pattern is off and on nerve pain.  When the pain is on, I don’t need to panic.  I need to convince myself all over again, through the thickness of the dark clouds, that healing is on the horizon.

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