Sharing the lessons along the way…

Posts tagged ‘friendship’

Another Fallen Soldier

Fallen Soldier

When I said, “I feel like more people have helped me along the way in my life than I could possibly ever help”, he said, “Now, wait a minute.  I doubt very seriously that could be true.”

He always offered encouragement and was quick to point out when others sold themselves short—including me.  I was also allowed to call him out on it because he did it too.

He was one of the sickest men I have ever met from agent orange exposure in Vietnam, but one the most giving.  Since I met him, he has died many times and been brought back.  After more than four years of being dead man walking with aneurysms ready to blow in various parts of his body and minimal heart function, his heart is now at rest.

I heard today that he died last Friday.

When he talked about dying over the course of the last four years, he said, “I have been blessed and have lived a good life.”  He wanted to spend whatever time he had left giving as much as he could and enjoying his life as much as possible in between his dialysis schedule three days a week.

He recently lost his best friend to suicide and I am sure that took a toll on his overall health.

It was because of my Duke that he and I connected years ago.  Duke and he formed an immediate bond and my bond followed.

He didn’t talk highly of himself because of his past, but I couldn’t find a negative word to say about him in the time I had the pleasure of knowing him.  His take on giving was similar to mine.  We choose to give without any expectation of anything in return.  If we have it to share, we will share it with our whole hearts.

I watched him give to others freely and lovingly over the years.  It made him feel good to do it and I would imagine that he has helped out a heap of people himself, although he would share very little about it.  He was humble, courageous, like Rain Man with numbers, and truly knew he was blessed to be alive each and every day I knew him.

I was honored to know him, love him and admired his strength of character.  What he has contributed to this life will live on in all of us who had the privilege of crossing paths.  Rest easy, friend.  You will be missed.

 

 

 

Family IS Personal

family is...

I started a piece about the importance of family and ended up with a piece about what my definition is of family.

It all started a few days ago when our lovely and awesome Dino Rara posted a blog about family.  It made me really stop and think about what and who makes up my family.  Family is truly a very personal affair.

Family for me includes my  biological relatives, which all happen to be quite unique and interesting humans.  Sometimes, I am proud to be related to them and other times they drive me batty.  I love them just the same.

Family also includes my friends who are present here in my world.  I value this diverse group of humans who enhance my world in ways that I have yet to understand.  I even have coworkers, clients and students that are playing roles similar to my older (or younger) siblings at this particular moment in time.

My friends out there in the virtual world are also a part of my family.  You are just as present as those who are in my world daily, weekly, etc.  You are as diverse as the other group, but I have not yet had the privilege to meet you in person.  That does not diminish your value to the family structure.

There are other beings in my family as well.  My dogs are the equivalent of children in my life, so they are also a valued part of the core family.

Family is family, so it doesn’t matter if you are genetically related or you are virtually related.  No one is any more or less valuable.  I have a relatively large family that spans at least the states, Canada and Australia.  I love that!

I love being open to including so many humans into the core family structure.  It wasn’t all that long ago that I would have chosen to have only my two dogs as my family.  There is so much I would have missed out on had I kept that perspective!

As it is now, I feel like I am unable to spend as much time with my family as I would like because I am trying to manage illness symptoms, work, etc.  I could not get by in this life without everyone who makes up my family–no matter where you are.

What do you define as family?  Are you open to allowing people into your world?

 

 

To Be Continued…

tp tbc

I cannot be sure which Tawny showed up for the hearing, but I did rally during the hearing.  Apparently, we confounded the Administrative Law Judge, so my case is postponed so that I can get more supporting evidence and try again for legal representation.  He needs to research what was presented himself.

During the discussions with the Administrative Law Judge via video conference, my not social security lawyer friend took copious notes and cheered me on with a few “Doing Well!” notes on her legal pad for me to see.

I got to explain about the pump, the symptoms of the illness, my part-time work, etc. as he was trying to understand why I was being reviewed to begin with.  We had a nice little discussion about the increase in homelessness across the country and the advent of tent cities.

Were it not for what she found in her research, and cheerleader Tawny half listening to her about it, it probably wouldn’t have gone the way it did.  Continuing the case was what we really needed.

Dejected Tawny almost agreed to continue without the most recent medical records and representation however.  My friend kept circling the word “postpone” on her legal pad, so I agreed to postpone.

It was best case scenario and at least prolongs my medical coverage at least until the next hearing is scheduled.

Because it seems that being better prepared with more medical records and information (and perhaps representation) could make a difference, cheerleader Tawny will do what needs to be done.

All Tawny’s are exhausted.  And there is much more “leg” work to be done.  First, I need to get some of my students’ assignments graded!

Thank you all for your words of encouragement and support after my post yesterday.  I hesitated to reach out, but am so glad I did.

Post Op Day 1: Ouchies and Answers

The day of surgery always feels better than the day after, unfortunately.  Since there are three incisions, it is a bit of a challenge to get comfortable.

The one in the back is at an angle the doctor said, and that was the only way he could get everything out back there that was attached to the catheter tip.  He said that might take a little longer to heal as well.  The other two are on either side of my tummy.

I talked to the doctor yesterday because there had been some bleeding from my back incision Thursday, and we had been watching that incision to make sure that no spinal fluid is leaking from it.

Pretty Flowers

Pretty Flowers

That is the purpose of the girdle (they call it a binder) that I showed you in yesterday’s picture—to add pressure to keep the hole where the catheter tip went into my spine from leaking.

The binder is pretty uncomfortable on the other incisions, but I am not about to remove it.

I took the day off yesterday from teaching so that I could rest.  I did rest, but the pain medications aren’t helping that much with the pain and they seem to agitate me a bit more than I would like.

The doctor kept me awake (under twilight anesthesia) while he did the back part of the surgery and he said that as soon as he got the catheter tip out, I was saying it felt better already.

My previous doctors had created a small loop there with the catheter tubing to anchor it and prevent it from pulling out of my spinal canal.  I am sure they did this because the Codman was pulled all the way out.

It is likely why I was having so much pain back there and apparently was also responsible for my torso burning with nerve pain.  I no longer have the torso burning horribly, although I may just have the incision pain competing for my attention right now.

I get to wear this girdle for two more days before switching to an Ace bandage around the back incision.  A spinal fluid leak would be quite a setback and would require a neurosurgeon going back in there and applying a patch to stop the leak.  Reminds me of fixing a hole in a flat tire, but quite a bit more of an ordeal.

Resting and being still should help prevent that as well, so that is what I am doing.  Not that I really feel like doing much else yet anyway.

Thank you all for the facebook love, the comments love, the texts, the emails, the flowers, the help and the hugs!!

Nowhere but up from here

photo (8)

I awoke almost feeling normal, or so I thought until I got up to move about.  Still a little dizzy, but nothing like the night before, I tried to go about my morning routine like it was normal.  I didn’t think I was dopey anymore, but knew it couldn’t all be over just yet because I was still walking well.

My head was hurting like only a baclofen headache can, so I made coffee to see if that would help while I posted my blog.  I fed my dogs their breakfast, checked big dog Mo’s stitches and noticed there was some swelling and redness on one side of the very long suture.

I took a picture so that I could sent it to the vet later.  I wondered if it was wise to still try to go to HEP with Duke since this baclofen overdose situation wasn’t totally resolved yet.  I decided to go later and only stay a couple of hours.

The dogs got leashed for a very short walk down the block to make them think they were getting out.  More’ wasn’t really ready to do much walking, but does love love to walk.  Six houses from home, I saw that his suture was leaking.  They aren’t supposed to do that, so back home we roll.

I called the vet and commenced picture-taking and sending to them.  He needed antibiotics.  Apparently, I sent the pictures to the wrong email, then tried to download the wrong program onto my computer for a work thing and tried to talk on the phone to a friend.  I was still dopey.  Crap.  I wasn’t driving anywhere.  I would have to go to HEP Friday.

I had been up for only two hours and I was over this day and the entire week.  Somehow, I mustered up the thought that this week had two days to redeem itself before I would chalk it up as a huge bowl of crap.

From there, the day gradually improved.  I got the antibiotics and a few errands run with a little help from a friend.  My dopiness and dizziness waned.

Of course so did walking well, but I will trade my brain for my legs without a second thought after Tuesday’s ridiculousness.  I heard myself say it twice aloud to two different people throughout the day yesterday.

And there it was.  In the midst of that entire nightmare was perspective.  I didn’t really need such a massive dose of it, but I got it.  I also have to admit that Tuesday night, I didn’t think that I could spin such a frightening day into something positive.

Seriously.  Even I didn’t care if this experience was going to teach me anything.  I honestly didn’t.  I was perfectly content feeling grateful for the people who were around to help me get through it.  I was thankful the doctor didn’t kill me and that felt like enough.

I am incredibly grateful.  I am grateful mostly that the week can only look up from here.

There is always a choice

“So, I read your blog today…”

Cool, and…?

“Should we take a minute to chat about your anxiety about the next decrease?”

Oh, well, I don’t think so.  I am anxious for all the same reasons I have been anxious each time—just the not knowing, but it feels pretty manageable.  Going below 50% seems a little different, but it is really just the same stuff…

“Ok.  I just wanted to make sure.  What is the plan?  Are you driving yourself?”

Ok, cool. Yes, driving myself.  Wednesday is when it will matter and Duke and I are going to work, so the backup plan for that is the same.  I think I got this.

photo (13)

By the time I had this conversation yesterday, I could hardly remember what my blog was about.  Blogging every day is wonderful, but I do tend to get them mixed up in my mind.

In the meantime, Duke and I had been to HEP in the heat.  I rocked the stairs while Duke, the cutest dog in all the land, rocked the rest.  During this conversation, I was in the floor with the cutest baby in the land.

I hadn’t forgotten I was anxious, but I had been amply distracted.

There really is nothing that different about this decrease than any of the others.  The gradual nature of the decrease in doses isn’t likely to create a scenario that doesn’t already have a plan.

I have been as proactive of a planner for this as I can imagine being, so it is only when I forget that there is a plan in place (and several backups) or forget that I can handle whatever happens, that I tend to feel anxious.  That has happened more in the evenings on the day of the decreases.

If I let myself go back in time to compare where I was early in the illness to some of the symptoms I have started to have again with the baclofen decreases, I can freak myself out a bit too.  I wonder sometimes if that happens unconsciously when I am less distracted.

While knowing the relative order of symptoms from pre-diagnosis, pre-pump years is helpful information, it comes attached with some seriously intense emotions.  Even recalling my symptoms during the pump swap in 2011 has some serious fear attached.

Those emotions are great for my book and for relating my story to others, but aren’t helpful to conjure up now.  Fear isn’t center stage on this leg of my journey.

That was how it was, but it is not what I choose this time.

Kitt O'Malley

Bipolar Writer and Mental Health Advocate

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