Sharing the lessons along the way…

Honeymoon Island

Honeymoon Island

It has been a while since my last post, and I apologize for that!  It certainly isn’t because I haven’t had anything to share with you, but have had very little energy left to compose anything coherent.

I had an idea for what I might sit here and write for you this evening, but by the time the computer restarted, I lost focus on where I was really going to go with it.

Instead, I will just update you a bit on my little world.

The catheter and I have developed a relationship much like you might have with a housemate or dorm-mate that you don’t necessarily love, but can live with amicably.

I decided that it is what it is. I have a choice about whether I want to focus on the icky of it, or I can simply focus on the functionality of it.  For now, it is a necessary tool to help me to function.

My driving is much the same as it has been—limited driving radius.  I try to be careful not to overuse my legs when I know driving is in the plan.

Walking is still as it was…walker with dogs or distances or ramps or inclines.

Clonus in legs and jaws remains about the same.  I have caught up on dental work so that I can get a different night guard, which should ease some of the jaw pain and headaches.

Spasms are a bit worse lately, which tells me I am not doing all that I could be doing to ease those.  I have pretty much taken the easier route to manage those, so perhaps it is time to do a bit more.

I have been out and about a little more because of a couple of deaths and celebrations, so it has been good to catch up with friends.

There were quite a few of those events all around the same time, so I am finally catching up on much-needed rest and recuperation.  I have met some extra special humans in the process of all of that as well.

Some of the outings have been for fun, and of course, to test the limits of what I can and cannot do.  For example, I still suck at bowling even though I cannot do it the way I used to do it.  I can bowl.  I can access the beach area to watch the sun go down with the newer walker.

Duke continues to hold his own both at work and in watching after his absent-minded professor human mom.  His new dog sister graduates the prison program Friday and then comes to her forever home.

I think I am ready to have two dogs again, although this is going to be interesting with the age differences.

I am finding that sleep alone is my best ally, so I have gone out of my way in the last two weeks to ensure that there is enough quality sleep (even if it is broken through the night) to get back to center.

Each of these topics could be a blog in and of themselves, and perhaps will develop into their own once I am back on track a bit more.

 

 

Never. Stop. Trying.

 

never stop tryingPerhaps you know this about me by now, but if it needs mentioned, I am a person of action.  If something in my life is not working, I make every effort to put a plan in action to change it.

I bring this up because I am starting to wonder if most of our medical care isn’t contrary to this notion.

Off and on for years, I have asked, “What else can I do about this or about that?”

Often the response I get is, “Nothing.” Or perhaps, “You can try this medication or that medication.”  My all-time favorite is “You can get used to it.”  That one I will never forget because that was about me being wheelchair bound and we know how that turned out.  I never did because I didn’t believe I couldn’t do something about it.

It is rare that I get information from a doctor that allows me to do what I do best—take action.  I have gotten this from physical therapists, occupational therapists, psychotherapists, alternative medicine practitioners, and speech therapists; however, in my lifetime of visiting various medical practitioners.

While I might not always enjoy what the action is (take the intermittent self-catheterization for a prime example), I am willing to take it.  While I don’t get information from the doctor or whomever, I will take action to research it to try to figure it out anyway.

Several months ago, I learned and started doing pelvic floor exercises in an effort to avert the need for the use of the icky catheter.  While it hasn’t prevented that, I know it is helping strengthen my pelvic floor area which is necessary for bladder, bowel, and sexual function.

Neurogenic bladders, neurogenic bowels and such are fairly common with spinal cord injuries and diseases that affect the upper and lower motor neuron pathways.

My illness supposedly has upper motor neuron only involvement, and I will spare you the details of what I have taken upon myself to learn about the relationship between the upper motor neurons and these neurogenic systems.

My point is this:

I am doing just about everything I can possibly do that is within my power.  If it isn’t within my power to take action, I am taking action anyway to change my perception about it.  I am never going to love the catheter.  In fact, I may always think it is icky.  But I can still appreciate its necessity and how little control I have over its new role in my life.

 

I Put What, Where?!?

eek!

In the spirit of really sharing what life is like with a chronic, progressive neurological illness, I felt like this too should be something you should get to know.  It would be my preference that this part of it magically disappears, but that probably isn’t going to be happening.

My last mention of bladder issues was in my last update when the urologist increased my medication.  The increase in medication to help me to urinate was not consistently giving me any relief, so the next step was to go in to have a nurse teach me how to self-cath.  I called last Wednesday, they said to come in that day, and I cried as I hung up the phone.

I really didn’t want to do this.  That was old news, but I didn’t know exactly why until the tears came when I hung up the phone.  More than not wanting to, I didn’t like thinking about what it potentially meant in the big scheme of things.

Just the same, I went, cracked jokes with the 22-year-old nurse who was teaching me, and learned anatomy that I probably should have learned in junior high science classes.  I toted out a large, clear baggie filled with single use catheters, along with my walker and purse back to the car.

Since then, I have gotten the hang of it.  My skill level isn’t matching my comfort level with doing it, however.  I find that each day I am growing more and more resistant to using them.  I don’t like it.  It’s gross.  I don’t know that it ever won’t be icky.  Of course it doesn’t matter how I feel about it, just so long as I do it with some regularity.

No one seems to be talking about this anywhere on the web.  They mention it, but don’t mention anything else—particularly what it is like emotionally to self-cath.  I never hear anyone with my illness talking about it, so it is my hope that someone somewhere might give me just a smidge of validation.

Neurogenic bladders aren’t talked about (some on MS and spinal cord injury sites) despite the fact that these are usually made worse by medications used to treat spasticity and clonus symptoms. I admit, this is not something I really want broadcasted out there on the world wide W myself, but it seems to me that someone needs to start the discussion.

 

The Tawny About Town

June got so busy that I actually forgot to mention a couple of relatively random, but fun experiences.

While it is only two brief moments of media fame, I wanted to share them with you!

If any of you are local and fans of National Public Radio, you may have heard my friend Marilyn and I share our story with the Story Corp folks.  We recorded our 30 minute story in January and WSUF played all of the local recordings.

You can listen to our three minutes of fame here.

 

Credit Story Corps

Credit Story Corps

My friends Dawn and Anna founded a non-profit organization called Murals for Mutts several years ago, and both Duke and Amore are on some of those murals that raise monies for other animal rescue charities.  Sadly, one of the murals in St. Petersburg, Florida has to be painted over, so we were on the local news talking about it.  I have one little tiny sound bite, but it was fun anyway! ;-)

Here is that clip:

 

Tawny St. Pete Pet Project

 

Duke and Amore’s picture was also used in the Tampa Bay Times Article about the mural the week before the news clip.

 

Now Leaving Crazy Town

Now Leaving Crazy Town

June has been incredibly busy and full of changes and crazy!

Duke started out the month with a serious back issue that at this point seems relatively well-managed with medications.  What was more interesting was how I handled the crisis initially, then what happened next, then what happened after that.

We were at work when I noticed he was tripping and having a lot more trouble getting his hind legs underneath him.  As the day wore on, it was getting worse, so I scheduled a vet appointment.  Within an hour, I had called the vet back to be worked in directly from work.

The good news was that it was his back.  What I had done in my head was to spiral him into complete organ failure.  Yes, I know.  I had gone to Crazy Town until our veterinarian came in and assessed the situation.  Tears of relief and worry only fell after that.

He was to call in sick for the rest of the week to rest and let the medications take effect.  It was taking a bit longer for the medications to work than I expected, so by midweek, I had explored a new level of Crazy Town.  I knew I had crossed a line toward a larger city.

I was in Crazy Town about work, about Duke, about social security’s repeated attempts to collect twenty-five thousand dollars, tending to my classes, and grappling what to do next.  Even in Crazy Town, I knew everything was going to be ok, but the town was starting to rub off on me, so it was making that idea of “ok” seem farther and farther away.

My friends agreed that I had crossed a line, and I already knew I was crossing it.  I had crossed from Crazy Town into the big city of Maniacal.  Reeling myself in, I started to take some action to get at least back to Crazy Town.

I back-tracked my route into Crazy Town from the city of Maniacal.  Along the way, I found a backup therapy dog to remove some of the pressure for work from Duke.  After several phone calls and several weeks, I scheduled a meeting with a nice (seriously she was) and helpful (really, I am not being sarcastic) woman at social security.  Duke was on the mend and got a good follow-up report from his doctor after having been back to work for over a week.

I was on my way home from Crazy Town after filling out an adoption form for a wonderful program that has rescue greyhounds they train and certify as therapy dogs.

Until, I took a wrong turn at a roundabout (I can never get those right).

I ended up back on the road to the city of Maniacal for a day because the processing of the adoption paperwork was happening too quickly.

Was Duke ready for another dog in the house?  Was I ready for another dog in the house?  This quickly?  What if the dog bumps Duke and injures his back?  I didn’t know how I felt about “replacing” Amore.

Shortly after my wrong turn, a beautiful road sign appeared that got me back on the right road.  I was heading away from the city of Maniacal, and was even almost clear of Crazy Town.

A local greyhound rescue had a perfect dog for me that would go into the other program, then come home in August if I wanted her.

Well, she greeted me at my car with kisses.  When she and Duke were introduced, it was as if they knew each other and she belonged in my house with us.

She started training Friday, I now have a payment arrangement with social security that is do-able as of Thursday, Duke and I have a work plan to moderate his activity and survive the summer heat at work.  The backup therapy dog will be on vacation for a couple of weeks, but when she returns, she will still go once a week, so that Duke gets a day off.

When Ruby gets back home and is adjusted, Duke will show her the ropes at HEP.

I have no plans to revisit Crazy Town or the city of Maniacal.  I wouldn’t recommend either as vacation destinations.

New Family

moment 6-1-14

I want to give you a long overdue physical update on me, so let me see if I have gotten a good enough handle on everything to share it coherently!

First, let me say that overall, I am still happy with my decision to remove the pump, and I am in no way complaining about any part of the symptoms or issues I am about to share with you.

Let me start off with that annoying burning torso that I have spent so much time talking about in previous blogs.  It is still there, still intermittent, still hard to predict and/or manage.  It is less intense and there are days when it isn’t present at all.

The urinary retention issues, which boil down to a neurogenic bladder, were much better as the baclofen dose in the pump was removed and early on when I wasn’t taking any medications that depress my central nervous system.

In order to function upright, I had to start taking those medications to better manage the ridiculous clonus symptoms, which has led to an increase in medications to help me empty my bladder.

It appears that the medications for the clonus relax the bladder, but not the urinary sphincter.  The bladder muscles need to contract to squeeze out the urine and the sphincter needs to relax enough to let it through.  Mine aren’t doing the right things.

If the latest increase in medications doesn’t help consistently enough, I will go back and learn to self-cath.  It sounds awful, but not being able to empty my bladder is far worse.

I am functioning upright with a new (and quite sporty looking) walker, and in small spaces and short distances without a walker, if my legs feel cooperative at the time.  While I am using up energy focusing on raising each leg to make sure I take full steps with my feet off the ground doing this, it is what I am choosing to do for now.

Could I conserve energy by spending some of my time in a wheelchair as the physical therapist suggested?   Absolutely! But I am choosing to arrange my schedule so that there is recuperation time in between activities that require a lot of walking.  So far, I am ok with this arrangement because I do not want my legs to forget.  It has been ok, even with the increase in hours at the Homeless Emergency Project and an additional online class to teach.

While I am driving short distances, I have figured out that I am having difficulty accelerating and sustaining the same speed.  If this gets any worse or I start to feel more uncomfortable, I have already started researching the possibility of adapting my car with hand controls.

The jaw clonus continues to be an issue, so whenever I am home working on my classes or recuperating, I always wear my bite guard.  It seems to be the best solution I can come up with at this time and it will do.

I am thrilled that even with the increase in working hours that I am able to keep my house clean and take care of all of those day-to-day things that are needed.  I am making it a point to get enough sleep and to have enough down time before bed as possible to make that even better.

While there are issues that quite honestly suck, for now, I think I have made those just about as manageable as possible.  Should any of those sucky things get worse, I even have some tentative plans in place for that too.

I have simplified and streamlined just about every area of my life in recent months and am taking all of this as it comes.  This frees up my brain space to be in the moment, which is a wonderful thing.

 

 

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