Once I Knew a Woman…

 

She was living each day as if it was her first.  She was trying new things, and marking things off her list that she had wanted to do but never took the time to do before she became ill.

There was little that doesn’t spark excitement or intrigue.

The only evidence of her past life in the wheelchair was a titanium baclofen pump, which was visible only if she took off her clothes.  Only then did offer some explanation of what it was for, and only then did she have to acknowledge that past reality.

She could talk freely about the past and the wheelchair, but the story was void of emotion.  She could talk about the homelessness and nursing home experience, but it had become a story that was about some other 30-something-year-old woman.

There was no emotional connection to it, at all.  At least not until the day she toured the homeless program in preparation for her return to volunteer with her newly certified therapy dog, Duke.

She was clueless really that she had separated herself so much from that former life until that day.

It wasn’t really until the pump drama began shortly after that day, that she realized the amount of scarring this time in her life created.  The intensity of emotion was often overwhelming.  The thought of life without the pump was so scary that she would have done anything to keep a pump in her body.

This desperation proved costly for her, but the time spent experiencing problem after problem at least allowed her to acknowledge the trauma and begin to heal it.

Without the pump entirely, she still grapples with the integration of both lives—life with the pump and without it.  Life without the pump is different from how it was before the pump, with the pump, and different still than in the early months of the illness.

Empowered by the EYE

When I started to stabilize with my first baclofen pump, I started to wander out into the world.  For the first time in years, I was getting around as an ambulatory person.  At first, it was with minimal assistive equipment, then with none.

As I ventured out, I did it much like a child does.  Everything I did was exciting because I never expected to be doing it again at all.  Walking up steps, walking on the beach, taking my dogs to the dog beach, riding a bike, kayaking in the gulf, camping and camping with my dogs were some of the things I did within the first two years of having the Codman pump.

I had a blast and no fear of trying new things or meeting new people.  I loved it all, and was open to any and all opportunities that arose.

I had gotten used to being appreciative of the simple things in life during my wheelchair days.  I appreciate and find my inspiration in those simpler things still, even when I am caught up in my own head about the drastic differences in my life from one three or four-year period to the next, over the last 11 years.

Now I relate to toddlers and younger children a bit differently.  The cutest baby in all the land is struggling with some of the same developmental tasks that I am.  We both have trouble with the pop up books, going up and down stairs (although she is getting better at it), manipulating small objects, walking too quickly, etc.

When she was first standing up and pushing her little walker thing, I was too.  It was cute, and she even helped me push mine in the mall parking lot from the car to the sidewalk.

I love to watch how excited she gets when she sees something new and exciting.  It usually isn’t something that would hold an adult’s interest, but it is certainly something that is new and fun for her.

I don’t know at what point as a child I lost this enthusiasm, but it was sadly quite young.  There was no particular event or anything I can recall, I just know it wasn’t there anymore.

Instead of the enthusiasm, there was fear and caution, which came with sadness.  Then later there was responsibility, fear, darkness and caution.  I am not sure how, but being stripped of everything when I became ill seemed to eventually lead me back to enthusiasm, despite the fears, responsibilities, darkness and caution.

The past few years of pump drama and social security appeals have sapped some of my enthusiasm.  Adjusting to life without a pump, still dealing with social security and other health issues certainly is taking a toll too.

Today, I realized I felt a bit empowered after spending two weeks in the eye of the illness.  I made it through it and still found my inspiration in my lilies, my dogs, and in the clouds in the sky.

It wasn’t fun and it wasn’t easy, but does that really matter?  What matters is that I faced it all head on, dealt with it, lived through it, and continue moving forward, right?

The Clonus Puzzle Piece

Today, I had my neurologist explain clonus to me.  I have researched it, but have never found a way to rehab it or manage it that didn’t involve medications.   To review, clonus is an involuntary jerking-like action that happens with the extension or flexion of muscle groups.  Mine happens at the extension of my ankle, knee, hip, shoulders and apparently some in my jaw.

He explained it like this:

The spinal cord is sending messages to the body all the time.  The brain’s job is to inhibit some of those messages.  When there is a problem with the brain or spinal cord, those messages aren’t inhibited.  This results in over excitation of the reflexes and other muscles that is called clonus (or myoclonus).

It seems my time with the baclofen pump served to erase my memory of the nuisance that is clonus.  So as not to belabor that minor flaw in my master plan, I will move on to the answer to my follow up question to my neurologist, “How can we fix it?”

It can’t be fixed.  Medications can help to inhibit some of what the brain is not inhibiting.  The intrathecal baclofen pump did that very well.  Oral baclofen didn’t do such a great job in the past, which is why I opted to have the pump implanted to begin with.

Even the increase in tizanidine (a medication similar to baclofen) I take at night isn’t doing much to help right now.  I am still trying to not take oral baclofen.  The baclofen fog is my last resort, but I also do not want to agitate my bladder issues again.

So we are switching the medication I take for the burning torso (nerve pain) to another medication that may help both the nerve pain and the clonus.  I will have to get used to taking this medication (that is sedating) during the day while weaning off the other medication.

My rehab efforts have been thwarted because stretching often triggers so much clonus that I can barely stand.  I didn’t have this problem as we were weaning me off the intrathecal baclofen because there was still baclofen.  Since then, the clonus has gotten worse without medications to manage it.

My hope here is to give us all a better understanding of clonus.  Really, what I am hoping is that I can wrap my head around it enough to better figure out ways to work around it.

Warmer Weather and Time Travel?

The sun was shining with the warmth of an early summer’s day.  It was a welcome change from the colder than normal temperatures and rain of the past week here.  The sky was blue with a spattering of clouds blowing around with the gusts of wind.

My dog and I were sitting around a table with some veterans catching up on things since our last visit.  The subject of computer problems came up, and after much discussion, it was determined that one computer’s problem started after a Window’s update.  Despite choosing a restore point, his computer still was no longer recognizing some of his hardware.

On more than one occasion lately, I have had to choose a restore point myself for my Window’s operating system after the updates have installed.  On the last occasion, there was no restore point option.   Restore points are time travel for the PC, but if you just re-did the operating system, there aren’t any.

One guy said, “Hey, wouldn’t it be great if we could select a restore point in real life?”  Everyone jumps into what became a quite lively conversation at that point.  But no one could fully commit to a point in their life where they would want to return for the purposes of starting fresh from there.

They all tossed around times in their lives, and I asked questions about the time frames they considered best to be their restore points.  Anyone new who came along was asked what time they would pick as their restore point.

Each shared about the time they would pick if they could, but after more discussion, everyone pretty much agreed they didn’t really want to go backwards.

I really didn’t have one, although I did think long and hard about it.  I listened to the discussions and stared at the clouds blowing around in the sky, as if there was a potential restore point idea up there somewhere.

The best one I could come up with was the period before I started having problems with my first baclofen pump.  Even then, I wasn’t sure I would want to potentially miss out on experiences and lessons I have had in the meantime.  Everyone else was picking decades ago, while mine was really just a few years ago.

This accidental discussion seemed to leave us all with some valuable information about our lives.  We were not necessarily willing to give up what we had learned and experienced, no matter where our lives had taken us since.

Were there things we could have done differently or better that might have made a different outcome?  Absolutely.   But there was also a chance that we could be in worse shape had we gone back to try to do it over again.

Would you choose a restore point for your life?

Conflicting Tawny’s

There are two opposing Tawny’s in my brain as I think about my hearing tomorrow.  One Tawny is tired of dealing with governmental bureaucracy and wants to throw in the towel.

The other one is a ridiculous pain-in-the-ass cheerleader who is trying to remind me of the fact that I am not a quitter.  She says I at least have to make my best effort, but each time that Tawny wins for just a bit, and the other one gets to work on it, it all becomes exhausting and confusing.

Decisions made by Social Security’s Administrative Law Judges are rarely overturned, so tomorrow’s appearance may well be my final shot at the buzzer.  The problem is that I am ill-prepared because of the other Tawny, who is ready to hold up the pole with the white flag.  In addition, the Social Security Law reads worse than Shakespeare, and I never really enjoyed reading Shakespeare much.

Legal help is hard to find when there is no money at stake.  I don’t want money.  I just want to have continued health care through Medicare to manage my illness.  I do not live by the label disabled, so it is also hard for me to go into such a formal setting to argue that am that label.

It is hard for either Tawny in my head to muster up entitlement, which incidentally is how they categorize people receiving any government-sponsored aid here in the US.  I have been an entitlement.

Because I have had significant medical improvement since I first applied for disability, I am essentially arguing that I continue to meet the criteria for disability under the Shakespearean law.

Even as I am writing one sentence after the other, both Tawny’s are at conflict in my mind.  I want to write a sentence that says, “Who cares?!  Screw ‘em!”  Then the other Tawny says, “You care!!  It will only screw you!”

The tired Tawny wants all of this to end.  The harassing letters from Social Security, the anxiety about going to the mailbox, the forms, the hoops, the sleepless nights…

Cheerleader  Tawny is not about to give up, but even she has had a harder than usual day and wishes to rest instead of making notes about what to say tomorrow to attempt to get a continuance since my circumstances have changed.  The appeal decisions so far have been made with my functioning level with the pump.

I am sure the conflict between my Tawny’s will continue as the evening wears on.  I sure do hope that it is the pain-in-the-ass Cheerleading Tawny who shows up for the hearing tomorrow.

 

 

I am not holding my breath

Since the baclofen pump was removed, I have been holding my breath.  I have been moving forward and doing all the physical therapy that I can tolerate, but I have been holding my breath that one day, when I least expect it, my symptoms will worsen.  I have been using past information and experience as my guide.

Our cold snap here in FL has certainly made my symptoms worse, but that is temporary.  I am very grateful I live in a subtropical climate.  Having the flu also made my symptoms worse, but so far, all symptoms are relatively manageable.

The added spasticity and clonus are making sprains and strains of muscles and tendons more frequent, but so far, that is the worst that has happened since the intrathecal baclofen stopped.  I do get more tired, more quickly.  I am more sensitive to sudden noises and startle more easily.  I am less coordinated.

The burning nerve pain from the wonky pump placement seems to be what it is.  Here one day intensely, and gone the next.  Perhaps it might be mild all day or maybe I hardly notice it at all.  I cannot predict it, and I have stopped trying to do so.

I can drive a car as far as I need to drive it.  I can almost sleep through the night comfortably.  I am not medicated to the point of not having full use of my brain, although there are times where more medication is needed.  It is possible that more medication will be warranted to decrease the strains and sprains, as those certainly decrease my ability to work.

Otherwise, I think it is time to breathe freely.  I am more than three months post op, so I would imagine this is a decent time to call a new baseline and continue to move forward.

Sometimes the past doesn’t have to be the best predictor of the future.