WHO AM I? LET ME FIGURE IT OUT!

 

Understand who we were.  Then after figuring out who we are, letting go of who we were is a good beginning.  Embracing the NEW us.  Accepting us as a child with lots to learn.  Having the support of family to help. 

Who am I?  We all have labels.

I was an educator in management and loved it. I got this job because of being professional and woking hard even tho I didn’t have the degree that was reqired.  I got it becasue of my “name”.  I was an author, a public speaker.  I loved working with people

I was a mom, love keeping house, having company, etc… and had lots of friends over.

THAT  WAS MY IDENTITY? CATHY CARLILE, Rex and Odessa’s child.  That was a priviledge.  I was married to a great man and had two  cute children.  I was Chip’s mother.  I was Mandy’s mom, I was Chip’s mom,  I was Heidi’s owner (dog), I am Charles wife,   These came with roles that most of the tme I liked.   

 5 months after the accident.  Smiling, yet if only my family knew or believed what I was going through,they would be shocked. I felt obligated to hide it as much as I could. They cared – I think they did, but it was lost on 2001-08-09 001 2001-08-09 002“them”.  They didn’t want to communicate.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Who Who are you now? What can you do and what can you not do.

Accident, March 12,  2001 , 3:15pm            

 TBI  (Traumatic brain injury), Dystonia (PAINFUL), Periphial Neuropathy (legs, feet, arms), (PAINFUL), CHRONIC PAIN, (PAINFUL)

RSD/CRPS (google McGill Scale) (VERY PAINFUL),  Fibromyalgia (PAINFUL), Virus’ that were dormant came back in the neruological area (weakest link?): HHV6 (some call it the “cold sore” virus),  Epstein Barr,  CFS (Chronic Fatigue Syndrome Syndrome.) 

These all cause other effects that are either painful, or inward a concern, outwardly I may or may not show, now speak of except to a few friends who are truly interested. (such as lose of hair, which was an emotional issue (I do not like how I look – it makes me look bigger!) , seizures/TIA’s, skin hypersensitivity, noise overload, cognitive dysfunction often mistaken for Alz. I am tested because of my family history ). I have a dr. who treats successfully. 

2001-08-01 001 2001-08-01 002  My 15 year old daughter still needed me.  I tried to be home when she was home, but now… I could do nothing but lay on the couch.  I
couldn’t understand her, and I hope I taught her how to laugh her way through trials.  And to pray.  Because I wasn’t aware of what I said, and am seeing it in my journals, I most likely ruined that too.  We were also close, and she shared what was on her minda lot of the time.  We went places together and it was fun… yet now it stopped.  It wasn’t her fault, tho children seem to take on that burden.  It was the fault of the 16 year old who was irresponsible.  These are the years I grieve for… as things got worse, she got further from me.  Someday I hope she will come back.

The frustration comes from trying to figure out WHAT I can do, and then realizing I can not do it. It takes all my time instead of the usual quick few minutes.  I have gone through hobbies I like, and have found something – painting, so will try that even tho I’m not a painter! We travel and my husband makes a bed in the car, or we cruise.  There is a pain crisis the first few days, but they are not as bad after 12 years. It is hard to sit at home and I do not process to put things up, even in the kitchen.  I don’t know how to cook, I try, but I’m exhausted and can’t finish.

I wonder if you will believe something so stupid?  How long does it take you to write an email?  Just a quick simple email?  5 minutes?  10 minutes?  20 minutes? (that’s putting way to much in to it).  It takes me many times 1/2 day.  See? I told you that you would NOT believe it. 

Because of this, I FEEL I am in trouble most of the time. Very little positive feedback is given from immediate family, and they have made their feelings known that I create more problems by trying to do things.  “Dad has to clean up after you and other duties, plus work” (sounds like young mom, right? lol)  I do all I can to be a good “patient” and he has told me he appreciates that. 

I have grandchildren and I want some memories I would have normally done, but can’t.  When trying – such as at TG, 2014, we got 3 large condo’s in the Hill Country of Texas.  All the grandchildren stayed with us (except the baby).  I wanted things to be nice – pretty paper plates, little activities to do with the children to teach thankfulness, etc….  I was berated on these things because “it left me tired and everyone was tired”.  All these things were done BEFORE we ever arrived.  I had TG taken away because of not liking my pies and dressing, and a confrontation took place with the question asked my husband “do you like MY pies better or HER’s (mine)?  It became more of an issue than enjoyable, as it was all about food, spices, etc… instead of being together and enjoying who brought what and being thankful.  The kids were not involved much as it wasn’t about memories for them.

I want to change that. I don’t know what my future holds.  The little game of pinning a tail to the turkey with something you were thankful for, was made into a laborious thing by my grand children’s parents. It was “silly and stupid”.  The few I did with the smaller children was something enjoyable.  “It was not called for as it was just more thing for me to worry about”.  I wasn’t worried, I wanted to make sure we could do it through out the days.  And it does teach them little things to be thankful for – family, etc..  it IS Thanksgiving, after all. 

The best day of that TG was when the two older grandchildren and I went to the crafty town and had a blast eating and acting silly – having fun. Then home to act however I was supposed to act, which I haven’t figured out yet.

My husband did speak up once, but he isn’t aware of some conversations I’ve had and the struggle I have of no one understanding TBI and Terrible pain. “Get a hobby, don’t get a hobby, it’s too much trouble for Dad and you”.  I stay confused on what to do around them or what to say.  They want the “old mom back who is confident and has self esteem.”  So do I, but pushing one down isn’t the way it’s done.  I can’t seem to get that across.  Because of some lack of knowledge, there is no knowledge of what is wrong and why things are done the way they are.  Yet, there is a double standard. 

This brings me more grief, more tears, and at times, ready to give up. I love my grandchildren so much and they are the joy of my days.  Whatever I do, I want to do and am willing for the consequences of pain.  They are worth that if it is at all possible.  Sometimes it is not.  ALL young families are busy with their homes, children, work and life.  I do NOT hold them responsible for my  happiness nor doing things that make me happy but they aren’t happy.  All I am asking for is respect and knowlege of what I am fighting and not give advice that is in every book of “WHAT NOT TO DO TO SOMEONE WITH….”  They are growing up, so things will get better.  I did not ask to be this way.  I took care of myself so that I would not be a burden or be someone ill.  This was not planned, and it is a great grief to me.  It is as much (or more) of a grief to me, as it is to them.  The older ones are wanting to help more when they know there is a “test”, etc. Oh, what a privilege for both of us…. the joy of getting closer.  Mine had to stop going to their grandparents – the lack of help was becoming to much.  I wasn’t told that specifically… but I understood what the problem was.  To have children who WANT to do is wonderful… so why squelch that?

 HOME LIFE

We laugh and say “my husband is the wife and I am the husband”. (if you get my meaning) He does a lot, and I do all I can to help. We have help, but it isn’t an easy life for him, as we can not do much as we used to do. I feel bad, although he doesn’t make me feel this way.

Most husbands have some down time…. his is at midnight. It may take me an hour to do one email, or more hours, if it is long. The few things I get done would take someone a couple of minutes – an hour or so. It appears I do nothing, which that’s about right.

Some days, especially after a big weekend (mentally or physically), I am a shell.

We want to communicate, but when he gets home, I end up doing things because I can do them better when he is here, although he doesn’t have to help.

He doesn’t seem able to communicate, and part of this, I’m sure is trauma, lack of support from those in his family that are concerned with other family members and have no idea he is sinking at times. He doesn’t say much, as he’s learned he will get turned down. (I learned that years ago). We have to pay for it, which is fine. I’m thankful we can do that, and I’m thankful we can help others, as that brings a good feeling.

I love to help another in a way I can. (another thing I get in trouble for). Mostly, it is because they are not aware of what I’m doing – it may be more of a support by being there, etc…   That was another big issue at TG…. I go to Florida alot. They were my “adopted family” although he was my older cousin. They were like my parents who had died. Now, he has died, so her and I have a very close “mother/daughter” relationship. This is “misunderstood” as going to help and getting sick again. She is 80, very healthy, but she is grieving, and I do help as much as possible. But we are aware of my limitations. We NEED each other. This is not looked at in this way.

Other pain/chronic illness people need help at times. We see it and know that they may not receive what they need. After waiting, then we ask if we can help. In the pain community, it is usually those who understand, helping those who are in need. Instead of downing us and finding fault, energy could be spent in helping. 10 minutes is like gold when it comes in the form of help. But, I would rather have peace, and a loving family, and that is what I strive for. I believe we could do it IF the family was educated.

Doctors speak of the answers to many questions of illness is support. But a solution is never given, as many are not aware there is NO support and we are not on a doctor’s salary.

YOU CAN GO BACK TO MENU AND SEE THE GROCERY LIST OF WHAT I AM DEALING WITH.

GOALS:

My goal is to keep focused and be a good wife, and a good mother. I do not want to be ruled by my children regarding my life’s goals, as they rarely see me, and when they do, I am happy. I’m happy because I am with them, not because I feel good. Sometimes being happy is confused with feeling better. On bad days, I may sit and do nothing. I struggle to be what I should be, but, I’ve learned I can’t.

Ironically, I have many young mom’s and their kids who beg to come see me (us), and have some that call me Nana too. They seem to think I’m doing fine and have always been kind in complimenting me. This goes a long way in feeling emotionally good.

I understand how necessary this is and although my children may not do all I would do, they still deserve my appreciation and pats on the back for their hard work and trying to make a good family.

I can’t figure out why I seem to be the black sheep. But, I do know that TBI can cause this and we are clueless. Instead of kindly sitting down and letting me know what I’m doing, it’s not common. I do not want bad habits and have asked them to help me.

I wish we could have the very close family we were…. they still talk to us, but there isn’t much interest in what we are going through. While that is normal to an extent – parents don’t tell their kids everything, as the child needs a parent they can go to without feeling they are being a burden for advice. It’s a difficult decision…. when do you involve them? I suppose when they are interested.Grandkids and Poppa

The  MAIN Patriarch with his two coming up behind him and that a voice.  If less criticism was spoken and more encouragement given, then there would be no sacrifice given that was in vain.  We never realize what our parents did to help us, yet we can’t be held accountable if it wasn’t wisely used.  Now grown, there is enough wisdom in this family to have helpful family meetings.
Some how, we have a very critical family and this is a lack of wanting to understand and have knowledge.  If they ever saw the man who gave so much, sit with his head bowed in distress, knowing he can’t ask those he thought he could….. it is an abomination to not only watch, but to understand this is not “honoring your parents”.  I don’t deserve this, it has been clear, but there is one how does.  This man expects nothing, and gets what he expects. We come in second, and we are trying to make peace with that.  Our worry is if I died, the grief felt can never be telt. The grief is uncomprehendable and hope it is something that others never have to bear.  All because of me.  My lacks can’t be tolerated, and it affects everyone.  I feel wonderful about that!   

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Teach others, especially if is in invisible. Help them understand. Advocacy is what that’s called and I love it. It’s not about me, it’s about others who are in silence. To make aware of those around each of us who may need us. It is beautiful to see a whole family become an advocate and join hands as one. And it’s sad when this doesn’t happen, and the person is putting on an act that will leave her crying because of emotions.

I do advocacy.  I can’t stand to see another suffer, no matter how small or not.  Pain is Pain.  ‘IN SUFFERING, AN ADVOCATE IS BORN’.  There is a lot of talking directly to the White House, as shocked as I can be.  10 are read a day by the president.  A petition was sent off and it appears we have a chance to change something’s.  I wrote (as much as I could) of my story with video’s etc…. and it was used to teach all in the pain clinics office and all doctors, PA, etc….  I was humbled.  Change comes slowly, but if you can get to the top (Linked In) etc… then you will make changes faster.  I’m shocked when I get one of the doctors who want to link in with me.  WOW…..  maybe it’s working.

I just finished a survey, one that already has shocked a few doctors.  They don’t ask the questions correctly, and if you don’t have an “expert” (someone with the problem who knows first hand), then a convention or any function is not complete.  I was shocked when folks agreed with me.

When doctors saw one in 15 thought about suicide and some thought and almost cried and some cried… WHY?    No support (the feeling of no one cares).  The hopelessness of knowing this is your life.  It’s not like a diagnosis that all understand and will take turns helping.  It’s the worst suffering just like Cancer, but there are no visits.  For a while, I had one person bringing food, one person driving 3 hours RT once a week to help, and someone who worked and when she could, would being things and visit before work.  I fired them.  Yes, you heard me right – I fired them.  They were working themselves to the bone, my needs were great.  Although a lot of hit did help Charles.  But we couldn’t stand to have them be the ones that sacrificed so much, even their health, to help us and drive so far.  We lied.  We said we were fine and could do it.  My friend knew I was lying, but she came less than once a week.

“Everyone is fighting a battle, but most of the time you wouldn’t know it”.  How true.  To think that at times you have sat beside someone who is so ill, they can’t imagine going on.  Sometimes sitting beside someone who has no use for living and made phone calls, and no one home, or to busy.  We do NOT want your attention.  We want your time when you have it because YOU WANT TO GIVE IT.  It’s so wonderful when someone comes and irons two shirts that are tee shirts (well, I forgot to get them out of the dryer quick enough).  Those two shirts have been hanging for weeks – or many months.  There is no time.  There is no strength.

We choose to be happy or choose to be unhappy.  Do it for yourself – Choose what you want, because actually I discovered that no one realizes what has happened.  Don’t disappoint yourself. 

You loose a lot.  Not weight – most of the time.  You lose relationships.  Every kind of a relationship, you lose.  Period.  Doctors do all these studies and have all these ideas that are laughable at times.  But they THINK they are asking the right people, but people don’t always trust, so they are very careful what they say.  I’m careful if I’m filling out something.  Most of those studies are not from the heart…. you can tell.  Some are, and they are wonderful.  I’ll tell you a secret…. if  you know someone with ANY kind of chronic illness – pain, etc… brings loneliness.  I guarantee, they have thought of taking their life, but family has stopped them when they think about it.  I guarantee they feel they are not loved, but tolerated.  Rarely do we hear – you are so exceptional, I know you aren’t feeling well, but you  do things that I can’t imagine.   (that is better than any pill).  Our life is boring.  Boring breeds more “boring”.  No matter what – their marriage is facing difficulties that will never be spoken.  Unless they are the 75% that get divorced.  They feel their spiritual life is gone down the tubes.  They are just a bump on a log. And churches are the worst place to get help.  That’s another sad point.

HOW in this world did they get this idea?  You, my friends and relatives.  My studies show that almost 1/2 of emotional trauma (and we are full of it) comes from doctors and staff.  The other almost 1/2 of emotional trauma comes from relatives and friends.  The TWO important groups of people in our life.  WHY?  We are not allowed to talk, no one believes us.  I have written about this in other places because it goes both ways.  Studies show that when one is able to talk about the trauma, it is greatly lessened.  NO ONE WANTS TO TALK and we don’t want to spend money to talk.  After something bad has happened, and the attitudes that are shown, soon trauma begins.  If it’s not taken are of, then the trauma is almost impossible to get past.  It takes lots and lots of help. 

With this, I’ll say….. IT ANGER’S ME TO REALIZE YEARS AGO IF I HAD SOMEONE TO TALK TO, AND IF MY FAMILY WOULD’VE SHOW AN INTEREST TO UNDERSTAND WHY I DID WHAT I DID, AND ACCEPT ME AS ME AND NOT ‘BROKEN’….. MY TRAUMA WOULD BE SO MUCH LESS.  I can talk about some of it, but the deep deep stuff…. has only great tears.  Tears are still good, so have a good cry. 

The last breakdown I had (which is common in others) left me with seizures back again.  Crying caused them to come back along with other things.  Someday I will explode.  I’ll apologize up front for the mess.

How do you feel about this?  Have you had great support and been able to focus on healing not on household issues?  Have you done something to make things better?  Tell us your story here on PM’s…. they are great to know.   We all have friends… we just don’t know who they are!

 

 

 

 

 

 

 

 

Concussions – Traumatic Brain Injury Simplified

FROM TRIAL FX ON YOU TUBE.

Oh my goodness. This is a silent video showing what happens when someone hits you from behind. (or what happens to the brain). I was hit from behind, and from the back passenger and front passenger side. It was referred to as “the shaken baby syndrome”. What is more interesting, is the PT Therapist I’m working with who is an expert in TBI, has told me these things of the twisting, and it actually causes the spinal cord to twist just a tad, but enough to cause so many problems. She has done miracles for me in the past few weeks. Someday, I’m going to be a normal person again (watch out! ha) It is better to see it coming as when you brace yourself, it helps. (contrary to what we used to know). The muscles you will see in the front and the back were torn – which takes forever to heal. Leaning to swallow, etc… felt like being a baby again. Since the brain was bruised in so many areas, every ability was affected. It’s like living in a different country and knowing the basic language of a young child. You learn to wear a mask, and try to act like you are intelligent. It’s exhausting! ha

I understand – with this video – what brain shearing is…. at the 1.07 minute the description begins.  Thus…what ever happens… more seizures, more TIA’s, more anything, is NOT GOOD.  This doesn’t heal.

LocksHangingSTOREFRONT

Brain Injury is a tragedy.  To the patient, to their families.  Woe to the families that do not understand, research to learn, go to doctor appoints….  For your family will fall apart.  Read how to keep things together before they get to far gone.  This is an encouragement, not a gloom and doom.  There are happy endings, but you must search for them, and be willing for the happy ending that is given to you.

http://www.traumaticbraininjury.com/- great website.

 

Being in Pain Means You Are Crazy !

Photo01211645
By using a pain pump, eventually, the idea is to get off of all oral narcotics and other pain relievers.  This is done GRADUALLY!  As the medications are tapered down, the morphine in the pump is increased until the goal is met.  Many needing high dosages of controlled substances like this idea as little gets into the system. The morphine drips into the spinal fluid, getting to the nerve pathways.  Very little is needed in contrast to medications taken by mouth.  Each month, the pump is filled (painless for me).  If an increase is needed, then it’s done at that time.  A bolus can be given about 5 times per 24 hours, via a wireless small box the patient places over the pump and presses a button.  This pump gives many a much better life!  Be EDUCATED and have a doctor who is knowledgeable about pumps.  My views and experiences are mine and may or may not be the views of other users.  Experiences differ, and my experience is rare.
GENERAL SIZE OF A PAIN PUMP BY MEDTRONICS
GENERAL SIZE OF A PAIN PUMP BY MEDTRONICS

 

 

 

 

In my journey of twelve years of severe pain and TBI (traumatic brain injury/concussion) that may never resolve, I’ve come across physicians who have never questioned if I’m “wrong”. Surely I am the expert of my body, and would know if I’m in pain! Most of these doctors also included my husband in all visits, which is smart on two accounts. One, the divorce rate for couples is up to 75%, and engaging the spouse, keeps communication open. Smart! Number two, is the one in pain is often not aware of their actions, or sleep habits, and what medications help more than others, and many other aspects of their life. Including the spouse, or another who knows the patient well, has not only helped doctors make better diagnoses, but it actually gives the patient more freedom from pain. Or at least a shot at it!

My husband was a major player in all doctors visits. They talked to me, and then they asked things I wouldn’t know about…. how does she sleep? Does she toss and turn? Do the tremors become worse at night? What do you notice when the pain becomes worse? What medications do you think works best? And eventually, “what do you think we need to do with the meds to help her get relief”?

Did I get upset because some questions were not directed to me? Absolutely NOT! I found it hard to communicate and came with lists I had kept between each appointment. I tried to be organized, but some things, I wasn’t able to remember or process. I NEVER felt I was commiting some sin, because of being the unlucky person who was on the freeway at the wrong time. And it was a great help in our relationship as husband and wife to be treated as a team, and work as a team.

Sure, we kissed a lot of “frogs”, but found a few Prince’s of physicians!

Fast forward to the 12th year of pain. Unbelievable pain. Pain that kept me from enjoying time with family, and grandchildren. We’ll skip the emotional pain of attitudes from friends and family that weren’t supportive, and turned away in our deepest need. We all know it comes with the territory, not making any excuses, of course.

Being on high dosages of Morphine, and other pain meds, my weight went sky high, and so did the pain! By the end of 2012, I was no longer a functioning member of our family. Isolated, rarely seeing faces, and my husband was not a team member anymore. Why should he come to all the visits – I could get there easily, and he didn’t seem to be important. In fact, I’m not sure why I went to the visits since it seemed I took up time that was already strapped, and the attitude of “GUILTY until proven INNOCENT” was the attitude.

I brought pictures of my family; my darling grandchildren. They were ‘oouuu and awww-ed” over, and an interest was taken over each one. After a quick rundown, I made my point…. THIS was MY family, and yet, I was not involved. I missed so many opportunities, and no longer was willing for this lifestyle. A pain pump had been researched and discussed with others, and I felt it was time. Surprisingly, so did the Pain Specialist. That was probably the last good judgment call that was made for a long time.

First, I was to be weaned from all Morphine. What? Did he not understand PAIN? He quoted some scripture, which was nice, and something about prayer. Okay…. so if I had enough faith and enough “pull” from above, I could do this. I DO believe that those in pain, MUST rely on a higher power, or we would find it hard to make it this far. I read his bio again and researched him, and it appears he changed from his previous specialty to Pain Management, as he had his own personal pain, and prayer was his cure. Oh, why didn’t I think about this before choosing him?

I doubt I have to tell much more of my story, er, nightmare! He was firm…. morphine has to be very low or stopped before the trial. My husband knew this was NOT going to work, so he was very careful in monitoring things. I lived in pain, rarely leaving the house in December. So much for the holidays!  I lied. I wanted to have at least 10% of life. I wasn’t off of Morphine, because I knew it was impossible, and this doctor has no clue about the reality of pain. (more to this story!) In fact, I was shocked at his naivety of a pain patients life.

Another surgeon put in the pump, and things didn’t go very well during recovery. The trial was perfect and so much excitement was in the air. Nothing was felt from the pain pump. I was bruised on every portion of my abdomen, but so what, I’d had surgery. I grew out of the band that is worn for the first couple of weeks. My stomach was large, yet no evidence of infection. Finally, I saw my Pain Doctor again, to have another increase in the pump, and he said it was a hematoma on the pump area that was making the abdomen large. Whew! Soon it would be better.  And another hematoma at the base of my spine.  (Whatever for?)

Except… no pain relief. My husband was not going to watch me roll around on the living room floor (literally), so he began giving me small dosages of morphine, along with the other medications. It didn’t help. I went from a .5 to a 5 in pump dosages in about 10 weeks. Emails were written almost weekly begging for help. I was no longer cognitive, and couldn’t think to even try to explain what was happening. I could answer “NO” when asked, “have you ever gotten relief”. He kept raising the dosage, but no relief.

Let’s pause here and consider. The booklet that is sent home, (which would also be something the physician would be knowledgeable about), said if the patient is not getting relief, check to see if the catheter is in place. NEVER was that an option, but requesting firmly to see a psychologist was! And just who needed to see a psychologist? Time went on, and a mat was made in our living room, and there I lived, with a bath once a week. Curled up in a ball, a helpless husband doing everything he could think of, yet no response. One day it hit me “I have to die! I can not keep doing this.” I didn’t want to tell my husband, but all I could do is cry and say I didn’t know what was wrong. I feared to stay alone, even though I was afraid to do anything, the feeling was strong. Saying goodbye each morning to my husband was a fearful thing. Many knew of our dilemma, yet we all know the common responses. Truly alone, I approached my husband, as he had gone into his cave – the only way he knew how to deal with this horrific situation. Calling him out of his cave, got action beginning.  Someday that will be his story to write.  I’m sure it’s a sad one.

Where I lived on the floor for 3 months!
Where I lived on the floor for 3 months!

On Saturday, March 17,  I didn’t know if I was having a TIA, but something was happening in my brain. Not able to think correctly wasn’t helping! I was scared. I felt I would die. I had been in so much pain, I had forgotten to pray. I couldn’t read my bible. I could call out and ask for help, but did I really have a relationship? As we all know, churches aren’t the best resource for those in pain. No longer was there effective communication in my extended family. My son would call, and listen or read my emails of not coping and write beautiful emails back.  He was empathic and always there if I needed someone. Three dear friends did what they could, but lived miles away. They came as much as time permitted. My husband was home as much as he could be, making sure food was fixed, and ready to grab. I was no longer a human, just a body in exisitance. Tears were constantly running down my face – it seemed they would never stop.

My husband wrote a poignant email to my pain doctor, begging for help. His reply? Out of town, hang on as best you can and will see you on Monday. Period. May I ask…. would this have been his response is this was HIS mother, loved one, sister? I know the answer… NO, it would not be acceptable. But it was acceptable for another. This was more than I could take in, and the look on my husband’s face – the letdown – is something I’ll never forget.

When answering the phone, the smile went on, and the mask became me. How could I explain I needed help? No one really wanted to know. Those who did, got the real story. Those who were in bad health grieved with me. Mainly, I was just someone with a “a headache”, it seemed. We were having a grandchild’s birthday in our club room, and It took all I had to go for a bit.  Scared, alone, intuition strongly said I was dying.  Sepsis came to mind – who knows why, but that would be a death sentence. Funeral plans were made on a scrap of paper.  I wanted my family.  I wanted their rational help.  Words wouldn’t come. We were drowning.  We asked for a family meeting but was misunderstood.  I could hardly look my husband in the eye, as he finished cleaning up. Crushed.

After 3 months of no relief, seizures, TIA’s, at least one stroke, unable to drive 1/2 mile to the doctor, a new PA came on board. He was concerned. The second week I came, (the day after my husband wrote his poignant email, and when I knew I was dying) he wasn’t going to let it pass. (I credit him with saving my life).  I was past communicating, although I knew our internist was very concerned and had done as much testing as she had available to her. She was concerned about the lack of care coming from my pain specialist.  The Pain Specialist practice was headed up by two well-renowned physicians, and one was called in to do a dye test to see if the catheter was in place. (only 3 months late in asking, instead of 3 weeks!!).

I had become so hypersensitive to touch, that I couldn’t be touched! I could only handle tight (swaddling) clothing. Showers were pins and needles. I couldn’t use the CPAP, as the air going into my nose was too “annoying” and almost painful. Air could NOT touch me anywhere. I couldn’t think one cognitive thought. I was lost in the milky way of space.

Touching my stomach to do the dye test, brought screams to my mouth, and shakes to my body, fear of me falling from the table was a concern. It felt good to be held down, and covering my mouth, I screamed as softly as I could, as the dye was put in. Concern was high, just because of the hypersensitivity. Then it was announced quietly. “The catheter isn’t in at both places”. (Meaning there wasn’t any hematoma’s, but a mass in front and a sack of morphine pressing on my spine in the lower back!)

I held my head and said over and over “I’m not crazy, I’m not crazy”. I wanted to announce to the world. I wanted it on the headlines! I WAS NOT CRAZY! My own pain doctor had little to say.

The other physician, who did the dye test, was merciful on surgery day. Not being able to be touch, I was “out” before moving me from the gurney. He was the only one who was kind, that- I do remember that day.

The Medtronic booklet says a side effect can be something like an inflammatory mass (which I accepted the side effects, but I did NOT expect to be ignored when things begin happening), he scrapped out a type of inflammatory tissue, necrotic (dead) as if I was rejecting the pump. No one has to tell me what could have happened if it went on. I was right… I would have been dead the weekend after St. Patrick’s day if not for a persistent PA.  The color already becoming brown, sepsis beginning. Death, unless one is fortunate, is 24 or so hours later. We went through this with a dear friend, who didn’t make it.

My temp was 99. I don’t bother to explain anymore because I am not believed. When I run a temp of 99, that is a sign of a higher temp. The meds have caused me to be unable to run a temp over 99, and normally anything under  100 is of no concern.

We asked for pictures and my husband was amazed. The Doctor said they completely re-did the surgery, putting the pump in an antibiotic solution, then putting it in a sleeve to protect the tissue against the metal. WHAT? Every video I have seen showed the pump in a sleeve for protection. I consider this MISTAKE NUMBER ONE.  (In my books). The catheters were unsuitable and were replaced.  But reality?  The one in charge of my care was the one I trusted to listen, to be pro-active, and to treat this with the care it deserved.

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Three months of excruciating pain, and Morphine was not allowed and was pressured to be prescribed. (thankfully my husband had extra and did the best he could) Throwing up was the norm. (Seizures? Withdrawals?)  How could this happen? How could a PAIN SPECIALIST not click before making so many adjustments to a pump that was NOT working? How could someone be so caught up in “psychology”,

How can ANYONE miss something so vital as a patient who was dying a slow death?

I wish I could say this was the end of the story. Because “something wasn’t right”, and I only knew it as “deja vu”, my neck muscles were rigid. My teeth felt huge, and I was completely disconnected to my body. It wasn’t a TIA, but WHAT was it? I knew if I mentioned too much, I would definitely be considered crazy. That night something happened that I felt was serious. I felt I needed to go to the ER, yet I was to ill. My little dog, my personal caregiver who never left my side, put her head over my chest/stomach area and held still. Intensely she was still. Not moving or hardly breathing. Then she sniffed the air quickly and her assessment was done! 🙂 She got in my face and looked fearfully at me. I was as scared as she. She never left my side. Finally, because of coincidences, (?), I looked up seizures. I had them before and I am on anti-seizure medication. BINGO! Deja vu! I was having small seizures that couldn’t be seen by my husband but could be felt by me. There were blocks of time I couldn’t account for but had decided it was from the pain. This feeling had been going on for almost a month. Later, I was watching a video I had done and to my surprise….(and horror) I had seizures!  It was noticeable, but I wasn’t aware of them!

Immediately I made an appointment with my Neuro who helped with many of my other issues, including seizures.  I was put in a room with a bed… I was reduced to this. In a mesh bag, that only my little dog could see out, and one couldn’t see her unless they really looked, she quietly sat and watched. She refused to stay at home and howled until I returned. Scratching off paint, trying to get to me. I couldn’t leave her anymore. She is quiet, but she has to be nearby. I had to respect her. I doubt anyone knew, except when I went to the restroom, I quietly said to the bag, “I’m okay, I’m going to potty”. She was quiet, but I wonder what the nurse thought? Maybe she looked closer.

Rosie
My seizure dog.

Finally, feeling safe, and comfortable, I could slowly answer questions. Along with improper weaning of Morphine for someone in extensive pain, diazepam had been STOPPED and Baclofen has been started in it’s place. I asked about weaning, but was told the Baclofen would take it’s place.  (not true, FYI!)

Just for your information, Hell hath no fury than a Russian (I think) PA who has began to understand the trauma imposed by someone who called himself a doctor. (her insinuation, but I can’t remember her exact wording). The more she discovered, her anger grew. The doctor she worked with was on his way out of the country, but she called him. I don’t think I would want to know his reaction to her findings.

In their bed, in another area of the office that is used at night for sleep tests, I lay unable to do much. It was too much to take in. To realize this wasn’t my fault. It had nothing to do with my spiritual life, not my psychological thought process, BUT BECAUSE I had a Pain Specialist who had no business being in the business of helping those in pain. He lacked listening skills. He lacked intuition. He lacked good judgment. And he lacked basic knowledge. I would almost guarantee, he would fail any test in regards to the pain pump. He would have failed because he had no idea what was in the booklet given to all pain patients. His attitude kept me from bringing up the obvious. Something was wrong with ME.

As I began to get better, I began to realize what had occurred during the past 4 months. All I could do was cry. The hopeless feeling was huge, and where was I to go and get the help I needed. As it has been said many times before, people in pain may not have real severe emotional issues because they have worked through them. But, because of not being believed, mental and emotional issues arise that otherwise would have never presented itself. So there… now my doctor is correct. Maybe I do need a psych!

My drawings became angry, my journals became angry. Not at him, but for what he caused. For what he brought up in our family, the things I really didn’t want to know was there. For the things that were shown of “friends”, and their life and happiness caused them to be too busy to give an hour to a struggling family. I didn’t want to know these things – even though I already did. My anger hadn’t got around to him. It will, and it is beginning. It will start with a long letter and education.

I have had other physicians, friends, and family beg me to sue. I have good cause, that wouldn’t be hard to prove. But where would that get me? Would it make me feel better? Would it help malpractice rates go down? Would it really change his thinking? Doubtful. He would say “oh, this patient was mentally unstable, but I did the best I could.”

I’ll take another route. I’ll take the highway. Not one of ignoring him (as he tried to do to me), but of educating him. Of getting rid of the “everyone’s happy” feeling he thinks pain patients life is about because we don’t tell everything. Because of doctors like him. I’m asked a lot about doctors. Because of where I worked, and experience, and my experience with pain. He is added to the small list of ones to stay away from. The few I talk to his patients were interesting. Women weren’t doing too well. Men were doing great. Never dismiss what research says.

How did I get through all of this? I’m not completely sure yet. I know God was with me because no one else was. Desperately needing to know, I asked for a sign, and it was granted. I did have some friends who went the extra 20-30 miles to come help.  I was fortunate to have a PA who “got it”.

Those on Linked In, were sure I wasn’t “mindful”.  Their judgment became too much. And they don’t even know me. I was given good resources from others (healthcare givers) and found the alternative help I hope to use. Ultimately, (as some requested) I had to listen to my body. To realize I KNEW what was happening. To stop and let my body tell me what was going on. To keep the outside voices out. To watch my little dog, who knew more than those with an education. Then, to think about my team, and who would help me. The pieces came together, and the “mystery” solved.

The anger directed by the PA at the office of  the Neuro, at such a horrible lack of care, was very validating. Especially, when a flash of anger in her eyes, and my thoughts were verbalized “you could have died”. I thought it was a crazy thought. A dramatic thought. In reality, my body knew it was a realistic thought. I often wonder if I had been with another physician who asked “what do you think is wrong”, would I have known the answer? I think so. Because I had read the booklet. But I had bought into “something was wrong with me, my psyche”.

When teaching at a well-known hospital before the accident forced retirement, that was something we taught to nurses and to patients. LISTEN TO THE EXPERT! Who is the expert? The expert is the one it is happening too! The PhD or MD is basically worthless unless the true expert has a say. If the little things were heard, and thought about, and more probing was done, and maybe even asking the 2nd expert, my husband, proper treatment would have been started, with proper medication, and a happy ending might have been the ending after one month of the original surgery. Especially if a “minor” thing, such as a sleeve, had been put on the pump! All the little “minors”, become “majors”. But, life goes on in their world. Unless it was someone they loved.

The Bounce Blog made a statement about resiliency that has stuck with me:

“Resiliency research has shown that being able to provide meaning to adversity is an essential part of being able to bounce back. This usually involves finding a positive aspect, some silver lining to a crisis. Maybe a new opportunity arises in one area of your life when a bad thing happens in another. Or maybe the crisis begins to make sense later when you get a bigger picture of the time frame in which it occurred.

(I am creating a blog post with part of this again.  RESILIENCY.  Using studies, research and general information, I understand TRAUMA and am not ashamed of how it has affected me. With that knowledge, it gave me the power to do my part in healing and allow God to handle the rest.  If we don’t understand the body and its cause and effect, then we will blame ourselves (and accept blame when it is not appropriate).

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It’s going to be hard to find a silver lining here. How do we make any sense at all of a senseless act? Maybe we don’t right now.
It’s part of our human tendency to chew on things for a bit before we figure them out.
It’s okay to not be able to figure this out yet. It’s hard because we so want to understand, we want it to make sense. Our brains are struggling with this contradictory data that it has encountered.”

Showered, Dressed! A days accomplishment!
Showered, Dressed! A days accomplishment.

My feelings exactly. Time.   Time to think. Time to grieve. Time to heal, not only our hearts, but those who were with us. Then, time to let go. There is nothing “crazy” about this.

And Rosie was promoted with a formal note from a doctor! A Service Dog!  I will write about her later.

PS.  By the end of 2018, I will be able to complete this story.   18 months ago, a doctor said to me “your statue of limitations are up”.  Expressing the trauma and how I could not talk, she simply said: “write it down and send it to the AMA/Texas Medical Board”.  One thing I will say, THEY ARE YOUR FRIEND unless you are harping on something that is beyond anyone’s control.  If you have experienced a mistake (the 3rd leading cause of death in the USA, but un-reporting could make it the 1st) cannot be tolerated.  I have been taken care of…mentally and spiritually.  They have been very kind, gentle and leading with a soft hand.  They understand.  I’m not a “number”, I’m Cathy.  We do have a place who will listen if something has been done that is a terrible crime against us.   I have great respect for those who oversee physicians, and how they handle mistakes that are completely preventable.  Thank you for your continued support.