ASSUMPTIONS IN LIFE  Puprle - Chronic Pain Advocacy


Looking back over these 16+ years of misery (in my terms) and learning (in God’s terms)…. I wonder how I have ever made it. And I wonder how I can keep making it.  Only through heaven and all the help that has come down, have I been able to  “it”. We heard this at a conference and it’s truer than one thinks.


Cathy 2001-05-18  (2)31
42 years old – had HOPE

I never thought at age 42 I would be disabled.  Considered by others as a TYPE AAA personality.  Never would I contemplate ever having anything worse than the flu.

Some put guns to their heads (and they have to research that – we could have saved them LOTS of time and money!) – that’s why CPRS is called the “suicide pain” at times. Some are surrounded by love, and those who care, and they go on and are willing to live a life that is as full as one can have.  Some are surrounded by – nothing.  They have passed the time of “being sick”.  And some have sick friends AND sick family.  Friends who didn’t know what to say (I’m sorry, what do I need to do to help you is plenty), still live in the recesses of their minds.  Friends who assume we are faking, we are not doing what we should be to get well, and those who assume we just aren’t interested anymore.  Why?  Because we have good days and bad.  Mostly bad.  They ask us to go somewhere, or to visit, to meet them at our favorite place.  We can’t get dressed, or hardly move.  Our brains are too full, and no more noise is allowed.  Our emotions are overflowing, and we know we will cry – and who wants to be around a cry baby??  So we excuse ourselves “maybe another time, I’m sorry”.  After a few tries, disgust is seen and heard and we are dropped from the list.  After all, we were seen out to eat or at a store yesterday.  Why didn’t we save that strength for today?  Because it doesn’t work that way.  Each day, we are given our day.  Whether it be bad or good.  If it is good, we take advantage and get out.  Rarely does it coincide with others plans, or even our own wishes.  +

I was surprised the other day at the doctors office, (which got me to thinking about this)…. The PA said, after filling my pain pump, something about “what has this taken away”?    What?  I asked what she meant?  She said again – clearly aware until now, that giving 30 minutes of time was the ultimate of to much! (smile) Maybe she wasn’t aware she was to be in and out quickly, not concerned with the psyche of her patients.

Hummmm….. This was going to be interesting to think of all the things I had tried not to think about.  All the things I had cried about, been depressed about…. until a huge seizure would not allow me to cry for a long while.  Crying was causing seizures.  Don’t ask… talk to a Neuro! 🙂 

1.  ME !  The ME I was used to, the confident me when in a sticky situation, the ME who could makes supper and pies for my family.  The ME who loved to bake.  The ME who could put food on the table with little notice for 20 people.  The ME who could drive a car past 3 miles.  (how about a few states with my children on summer when hubby had a big project)?  What about the ME who could talk, and actually most of the time- people understood what I was saying.  Or write and make sense.  The ME who didn’t put their foot in their mouth 89 times a day.  And never know it.

2.  The ME that met friends for lunch, who KNEW I had met them for lunch a few minutes afterwards.  And could relate what we had said.

3. The ME that lost their two children, but actually gained two more.  I didn’t lose – I WON four kids for the price of two!  WOW!!  Now, they are older with grandchildren.  They are busy, but most mothers (ME) can GO to them and help.  I’m one of those who sits and needs help.  This makes me angry.  Someday, I hope they will come back to me…. because I miss them, especially  my daughter.  My son drops by and we see them at times for lunch.   Gaging by FB, and my experience with my mother when she lived nearby, how many times does a daughter see her mom?  


I got homesick by 5 weeks when they moved.  But when living in town, we met around twice a week.  An hour or so out of my day, was worth it.  In fact, a while after we were married I told my husband on his mom’s birthday, he should be taking her out – alone.  It would be special for a mother to be with her son, alone. Doesn’t take a rocket scientist.  I knew that would be special to her.  All mothers are different and her focus is on her children.  When the kids ask one, they expect the other.  And I the same with mine.  A difference in raising…. a matter of “gaining” not “losing”.  But I respect that….   

I sit on the back burner.  I understand, that’s my place right now. It’s not their fault about my health and it’s not my fault they had 7 children (but I’m glad!) but at least humor me!  If I had a mother/daughter day once in 6 months or a year, I would be happy.  I don’t react anymore.  I understand about kids and promises.  

I’m not the overbearing kind who expects my children to make me happy.  My dear Daughter in law used to come bring Alexis for lunch –  but she needed to work.  I miss her terribly. And I also understand.  My DIL never knew me when I was ME.  She met me just a while after my accident.  My son brought her over and I knew immediately – “SHE BELONGED IN OUR FAMILY”.   I’ll brag a bit, but she’s got a good job, and she’s a good mom and wife and she is my “daughter”.  Merika & Nana

I was able to be with my daughter for her first child.  As a childbirth counsellor, I knew what to do to make things easier on both of us. But my the time #3 came along, I was much worse and her FB page of being heartbroken spoke for myself, too.

7 Grandkids
#8 Grandchild  Was born today! Feb.27, 2016. Saw him 1 wk later

4.  I miss the ME who could visit family.  No visiting, no closeness.  I’m sure they are suffering just as much, as they have disabilities also.

5.  I  miss the ME with the dreams.  Dreams that were doable.  I miss the ME that was a wife.  Now, I’m a boarder.  My husband has to cook, has to check to see if the ice cream was put up.  When I can’t find my cell, he knows to say “check in the refrig”.  I put things down when looking around.  I miss our life growing older together.  It’s not anything like I thought it would be. 


Because Chronic Illness and TBI DESTROYS life. (I didn’t say this, many doctor’s have – but I agree!)  No one believes us.  That is why there are many closed sites for us to discuss the things we wish for, the things that bother us, etc… because no one else can comprehend.  It’s impossible.  I know… I was healthy at one time.

DSCN3488 (2)

6.  I miss the ME who didn’t have to wait until I could talk/comprehend/speak all intelligently in order to make a call.  THIS DRIVES ME CRAZY.  Sometimes my husband will tell me what I said that I was clueless about.  ULG. 

Once I watch a video I did – a type of documentary.  (now I wish I could find it)  I was looking at it again and in HORROR watched as I had a “silent seizure” and melt afterwards. Thankfully, I don’t think I ever posted that one.   I began to read slowly about the senator who was shot… head injuf

7.  I wish I  could have a dog.  I DO have a dog, but she isn’t a real dog…. she is a SERVICE DOG. How many times do I hear “I wish I had a Service Dog”.  DO YOU NOT GET IT?  If you had a Service Dog, you would be feeling miserable.  Do you have brains?  Never mind, don’t answer.  I am thankful for ROSIE, but I wish ROSIE was just a DOG, not one I had to constantly be on the ball… training, keeping her trained to have better manners than any child!  (which might be easier!)  rosieAnd did anyone tell you – NO SERVICE DOG is to be touched, spoken too, or acknowledged in ANY WAY?  I didn’t think so.

A dear friend wrote me a note and talked about “ME”.  Someday I’ll post it… it’s very encouraging.  We put on an act, it’s not easy -after all, do you hear everything about someone who is ill?  Of course…. but they know it’s not the rest of their life. 

That is what is hard…..  how can you tell someone how you are doing when you aren’t sure?  You aren’t like you were, but there are plenty of things going on.  I doubt they would want to hear I lost it last night…. I wanted to die…. I felt like a burden…..  No, we don’t have anything interesting to here.  And that’s fine.  Just acknowledge that I’m here.

Something I find very things very humorous – I know every ailment on my husbands side of the family (but I can’t remember).  We are kept up by his mother.  Which is honestly very nice.  The irony is…. she knows very little about me.  I’m not sure why she doesn’t ask.  Why doesn’t she sit like she does to others, is explain what happened, why, what and how come.  She needs to talk about her accident she had.  Because that’s part of healing.  I was shocked to hear her argue (that’s her way of conversing, we take no offense) that I was NOT hit 3 times, but just once.  OH…. I forgot.  It sure felt like 3, and it was written down as 3, and the car showed 3, how silly of me.  She never asked.  It was a little family joke, (to keep my husband laughing, as I thought she would be more supportive of him) but when she called, and then asked “How is Cathy?”, sometimes he got to 8 SECONDS!   It is impossible to tell a story of this kind in seconds at a time.  But why ask him?  I’m sitting there to at times, in the car, at the table, with nothing to say because the conversation isn’t anything I know about – people I’ve never met (and sometimes my husband hasn’t).  But that comes with age. 

Mom is Crazy

I’ve got to write that down in my book of “HOW TO DRIVE YOUR CHILDREN CRAZY” or ‘HOW TO BE A GOOD ELDERLY PARENT”.   My son quietly reminds me that HE is most likely the one to pick the nursing home for me! lol.

I do research.  The kind doctors don’t do….  they could by simply asking their patients but obviously that hasn’t ever been discovered or researched.  I’m saddened by what I see and hear.  I’m not surprised and it’s what I expect.  But why is an Invisible Illness thought of worse than some disease?  When I mention to my doctors on occasion what I’ve discovered, (which doesn’t take a rocket scientist), they are shocked.  Yes, your patients don’t tell you a lot.  Because you have not earn their trust.  You have done worse, research shows you have turned their trauma into a big emotional trauma.  What a magician.  We are people.  Your mother, your sister, your brother, your child.  There are ways to help, and congratulations, you have figured out what is needed.  But…. it’s not good unless there is a true solution!   We must figure that out….

Once, (or a gazillion) I went to the doctor and the doctor said…..  “YOU LOOK REALLY GOOD”.  I know…. a whole book was written on this line we hear.  If I was a Dog, my hair would be standing up on my back.  OKAY…. let’s get this straight….

WHAT WERE YOU EXPECTING TO SEE?  Body parts brought in one by one?  Someone who could barely move?  (well, I’ll admit, there are times that you do see this)  INTERNAL means inside.   EXTERNAL:  means outside.  So, if there was an accident or illness – after some time – there are no EXTERNAL signs.  (I’m speaking in general here.)  BUT, you know there are specialist who help us with the INTERNAL complications we are experiencing.  And as you see, we have a team.   That team treats INTERNAL complications that are rarely seen EXTERNALLY. I know people are different, personalities are different, etc….  but one thing I HAVE NOT LOST IS THE ME THAT ALWAYS LOOKED PRESENTABLE BEFORE OTHERS.  You will have to blame my mother for this.  My dad died of complications of Alzheimer’s.  If you didn’t know better, and if you only greeted him, then you would say HE DOES NOT HAVE ALZHEIMER’S.   If he doesn’t have Alzheimer’s, then I don’t have the grocery list of INTERNAL complications.  He was the example of how to have the worst disease and make it funny.  Then he could try to fool you into thinking he was teasing.  Then he learned when to keep his mouth shut.  (I’m still learning)  He looked great, he had a great personality, but he had one of the most dreaded diseases.

It’s a CHOICE.  There are stages of grief, and shame on anyone who is not aware of them somewhat.  We’d keep our feet out of our mouth a lot.  One stage is “talking”.  We must talk to get it straight in our heads.  Yes, it’s not interesting.  But I’m so thankful for those who were kind enough to listen, and listen, and listen some more.  Then thank ME for allowing them to learn what they learned.



It’s simple:
If I can’t talk and be understood, THEN I DON’T TALK, (I sound more intelligent) .

If I can’t be trusted on the phone, (either I’m depressed and don’t want to bring them down) or for another reason…. I DON’T ANSWER THE PHONE.  (the world hasn’t ended yet).

If someone has asked a question, and I’m unsure how to answer properly, then I try to wait.  (most of the time)


Those that care, see past this.  They allow you to talk and not give advice when they have not experienced this.  Of course I’m doing good…. I have good days and bad days.  You may not see me on bad days.  I save those days for the doctor! 🙂

“For someone with all you deal with, I am amazed how you are so cheerful, and sound happy. Let’s talk soon and share what is REALLY going on.”   Please meet a good friend who understands, or a doctor who “gets it”.  I’m sure you will be pleased to meet them.

2015-12-29 21.47.39
Hair, hair, nice to see your

PS.  For anyone who doesn’t understand somethings regarding someone who is trying to bury a life that is still alive, maybe this will give you some tips.  It takes a lot of courage to start over – with everything.  Even if you have to ask your husbands middle name!  (which happens to be my sons middle name!)

*****Venting is very different from complaining. When someone is told to STOP COMPLAINING, ultimately, they have just said “STOP GRIEVING”.  If this happens, you have just created a huge trauma in their life.

Someone said “Grief is the loss of ANYTHING of value to that person”

Who are we to decide what is another’s grief and how long it should last? Our job is to support and encourage.  Rarely and surprisingly do those with a chronic illness/disability have the family and friends they love behind them keeping them going.  I am the youngest…. and I had good support that was as possible as it could be.  We we trying to care for aged parents.  Sometimes we would have more, but something has happened to keep it from us.  A LEGIT reason!

We have chosen joy, but sometimes grief comes and must be dealt with….

Have you experienced the same?  


Fun – it’s important.














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