The ugliness of survivors guilt

I have survivors guilt. BIG TIME.

In 2011 my husband saved my life. He paid attention! He knew I was crashing, and constantly being hospitalized for bleeding episodes. He is not a Hematologist, but he is very smart, summa top class of his class smart. He worked the problem, and I am alive today to tell the story.

He loved me enough to go to any measures necessary to save my life. He rushed me to the hospital, he begged his partners, and about five different specialty doctors to evaluate me.

The result? A diagnosis. One that was long overdue. He didn’t know what it had done to me neurologically.

As of today, it has been 8 years, and three months. I have seen many specialists, a new hematologist at VCU, and a fantastic psychologist, that has helped my brain heal.  I have IV medication (Von Willebrand serum) on hand if I need it, and medication for the constant bruising, and I am better.  I kicked opioids in April of 2018.  Although they gave me some the evening of my Brother’s death (IV) because I was in the hospital, and had to return the next day.  I did not take a prescription home, and I will never ever take them again no matter how much pain I’m in. Those drugs make everything worse.  Furthermore, they were making me stupid!  We have to get these drugs off the streets, and Doctor’s really need to evaluate how long to give them after an episode.

What I do know, is when my Brother Corey passed, I thought it was my fault. I had the records that he gave me, and I also had the records that the Hepatologist had given my husband with my Brother’s consent. That was in May 2018. He died on September 9, 2018.

Why? My sweet Sister and my parents are convinced that it was his time. God had called upon him as their Angel, and it was simply his time. I want to believe this simple analogy. It’s easier to accept. I’m listening to the audible Bible and halfway through. John 11 gives the most comfort. I just won’t lie. Given this history in medicine, and now this new learning in religion, I’m still 50/50. Could I have done more to save him as was done to save me?

My husband says NO. He says one is truly hereditary, and medical (me) and one is bad luck, or maybe lifestyle. That still doesn’t make sense because he held the same job for 18 years!  he was so beloved by everyone he met.  He still hasn’t been replaced at his former job he was so smart. I am a Mom had almost always had the luxury of being my own boss.  Some really successful endeavors, and some just ok.  I just knew that I had no choice but to survive.  That’s difficult to do when you’re exhausted after 13 surgeries and 11 blood transfusions.  I will never forget my husband rushing me to the hospital the last time with a hemoglobin of 4, begging his Partners to help saying  I was crashing fast.  So many Doctor’s and nurses rushing around, and my husband was not about it let me die.  When things looked like I wasn’t going to make it, my husband called my parents.  They rushed to the hospital, and at this point, I was about to just give up.  I was so tired, and I was ready to call it quits.  At that moment, I saw my Mom rush into the room.  I felt so guilty that I had always worried them so with so much medical trauma, so many hospital stays. I remember looking up at my Mom and thinking I have to fight.  I have to survive.  I can’t quit.  Mostly because she probably would have killed me herself if I didn’t fight for myself! Suddenly, I could almost feel my arms and legs again, I was turning the corner to hold on, more blood was on its way and my surgeon was racing to the hospital for another emergency surgery to try and stop the bleeding.

It’s difficult to comprehend. It’s hard to know that my Brother was such a better person than me, kinder, gentler than me but due to economic circumstances I survived? So, guilt?  You think?  Yep.  I have been upsetting my family.  Not on purpose, but they really believe it was his time to go, and I need to just give it up to God.  They believe God needed another angel.  So, because I love them so much, I am going to do just that.  I’m still going to give back to charities, pay it forward, and start awkward conversations that are for the greater good, but I won’t make it personal.

From here until eternity. I am going to believe in my family, that loves me. A sister that makes me laugh at loud, a niece that fills my heart with joy, and my parents who need peace.   They deserve some peace. This is my last post about this.

The end.

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Xoxo,

The Mask of the Doctors wife

Raw…September 8 & 9 2018 …St.Mary’s Hospital

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Today I had an alert on my Bon Secours patient portal account.  I logged in to see a bill that needed to be paid and continued with that process.  Afterwards, I decided to review the notes on this particular visit to the Emergency room visit.  I can remember my husband taking me to the ER around 10:00 pm on September 8, 2018, for an exacerbation of suprapubic and left lower quadrant pain.  After a CT, and multiple tests we basically confirm that there has been another episode of a belly full of scar tissue due( a knot in my gastrointestinal tract) to multiple surgeries prior to my diagnosis of the bleeding disorder of Von Willebrand’s Disease, or more importantly the late diagnosis thus leaving me without most of my disposable organs, only one half of a left ovary remaining that couldn’t even be seen by the CT.  It’s not life-threatening but it is extremely painful.  It can be controlled most of the time by a good diet, exercise, and stress management.  I had just opened a new business and basically stay on the Keto Diet and probably had indulged in too much red meat.  Depending on your overall health, medication usage and the state of your digestive tract, it takes 24 to 72 hours to fully digest red meat.  This coupled with the IBS in general probably caused this attack.  It will eventually dissipate, it’s just painful, scary, and takes time and rest.  Rest is hard to come by when building something new.  I eventually begged to be discharged around 4:00 am, to go home to my own bed.   I was still hurting badly but for some reason, I just knew I had to go home.

I can’t remember the exact time of the phone ringing.  We had just gotten into bed around 6:00am.  My cousin was calling, and I had several missed calls.  My cousin called again and I just knew it wasn’t good so I answered to hear my sweet cousins voice saying, Stephanie, I’m so sorry about…I dropped off the side of the bed and starting crying and screaming begging her not to tell me that my Brother had died.  Please, I begged, No…No…No…I couldn’t catch my breath, I remember her asking me if Gary was home.  That’s it.  I cannot recall the order of events that led my three grown children, my Sister, and my parents to all arrive at my Brother’s house.  I just remember seeing my Sister and that stained face running towards me as we hugged and cried.  I remember the group hug with my boys and my oldest son that arrived at Brother’s after his late shift at the gym to find Police there and they made him wait outside.  My belly kept growing in pain, my back that had been pain-free for a full year suddenly hurt so bad I couldn’t move.

My husband said we have to go back to the ER.  It’s getting worse……..The FOLLOWING are the notes I read on my chart that shocked me…Edited to protect the staff and their names…

ALLERGIES: Nsaids (non-steroidal anti-inflammatory drug)
Von Willebrands Disease
Review of SystemsGastrointestinal: Positive for abdominal pain. Negative for diarrhea,
nausea and vomiting.
Genitourinary: Positive for difficulty urinating.
Irregular heartbeat, tachycardia tremor
Vitals:

09/09/18 1310
BP:
(!) 159/94
Pulse:
(!) 114
Resp:
20
Temp:
98 °F (36.7 °C)
SpO2:
99%

MDM
Number of Diagnoses or Management Options
Diagnosis management comments: Impression: 46 year female presenting
to the emergency department with a re\re exacerbation of suprapubic and
left lower quadrant abdominal pain. Seen here last night, CT scan
revealed no acute findings, possible IBS, multiple surgeries, scar tissue. Nor did
any of the laboratory analysis. She did have mild urinary retention. History of herniated discs, husband tells Dr. she hasn’t suffered from back pain since pt went off pain med.
The patient this morning received news that her younger brother had
unexpectedly died. She returns now with continued symptoms.

Differential includes urinary retention.

Plan of care we repeat labs will hold off on CT scan we’ll do Foley
catheter treat symptomatically likely for
relief. This may be all secondary to adhesions as well.

ED Course

Procedures

PROGRESS NOTE:2:19 PM
Provider updated patient and patient’s family on results.

3:59 PMChange of shift. Care of patient signed over to Dr.
Handoff complete.

Addendum RN 9/9/2018 2:02 PM

1320: Patient in room from triage, hooked up to BP/SPO2 monitor,
husband at bedside. Patient crying in room, husband requesting pain
medication, assigned MD notified. Labs drawn, Line patent. Patient
crying and twitching during blood draw, states IV site hurts asked
patient if she wanted a new IV at this time, no answer received.  Pt unresponsive, husband, physician, speaks of her history, speaks for pt. she cannot verbalize what is happening.  Physical sympt returned due to trauma.  PTSD.

1327: Primary RN and MD at bedside.

1345: Two RNs present during catheterization for sterility. Patient
c/o pain, convulsing in bed, holding breath and crying during
medication administration via IV. Line flushing, blood returned
achieved. Offered to pull IV and start new line, patient now agreeable
to new IV. Patient HR on SPO2 reading 30s, patient bearing down and
holding breath, cardiac monitor applied. Patient HR low 100s on
monitor.  MD notified, orders
received.

Addendum to RN:

1345: Two RNs present during catheterization for sterility. Patient
c/o pain, convulsing in bed, holding breath and crying during
medication administration via IV. Line flushing, blood returned
achieved. Offered to pull IV and start new line, patient now
agreeable. Patient HR on SPO2 reading 30s, patient bearing down and
holding breath, cardiac monitor applied. Patient c/o back pain, history of the herniated discs, sciatica.  MD notified orders
received.

RN 9/9/2018 1:30 PM

1320: Patient in room from triage, hooked up to BP/SPO2 monitor,
husband at bedside. Patient crying in room, husband requesting pain
medication, assigned MD notified. Labs drawn, Line patent.

1327: Primary RN and MD at bedside.

Patient in room from triage, hooked up to BP/SPO2 monitor,
husband at bedside. Patient crying in room, husband requesting pain
medication, assigned MD notified. Labs draw, patient crying during
procedure. Line patent.

1327: Primary RN and MD at bedside.

Addendum to note by  RN 9/9/2018 1:08 PM

Pt was seen here last night for LLQ and pain, CT and labs are done, CT showed
the sigmoid colon. Also had urinary retention and had a cath done
for this. Pt had moderate relief after last evenings treatment the
and swelling was going down. Pt was discharged and during the night pt
received a phone call that her younger brother died and is having same
and pain and distention again. Denies nausea and vomiting. Pt crying in triage.

I really don’t remember most of this. I remember many nurses, and several Doctor’s trying to talk to me and rushing in and out of the room.  I think one nurse was always present. I only remember wishing that it had been me that had died.  My Brother was so beloved, sweet, kind, good, and he loved me.  I remember praying to God, please bring him back and take me instead.  I almost died in this hospital in 2011.  I am the older Sister by eight years, this is not the natural order things are supposed to happen.  They gave me pain medication but my heart and gut are still screaming.  Dear God, please take me.  My Brother is so good, and my niece…OMG, what about her?  Then, slowly I felt a shift of calm.  I can feel him here with me.  This is real, I can’t fix this.  Ok, Steph, fight, fight for Mom, Dad, and everyone that depends on you.  Fight.

 

Life is for the living…

Take the time to smell the flowers.

Welcome Scan

Two months and five days ago my families world stopped.  Yet, beautiful memories remain, and life slowly moves you forward.

This is hard stuff, we want desperately to go back, to watch the video memories.  So, if it’s one of those days that you just need peace, watch the video but keep facing forward.

Some on Corey’s greatest hits!

This is the Corey I know

The sunlight feels good again, and getting out and JUST doing what you can every day is the only way through it.  You just are, and you just must do it.  It’s the only way to rejoin the living and smell some flowers along the way.

I have learned it’s important to just let the waves of grief come, that freight train is probably still coming around for a while.  Then something odd happens, it’s not so bad, in some ways it has taught a valuable lesson.

Romans 8:28

28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

My Brother is a beloved angel, and I now feel it’s okay to move on some.  He is with me in spirit, and he would want to see me living my life.  Easier said than done, however, we are all trying, hoping, and embracing positive change and unconditional love.  This is how it is written and at one point in my life, I believed God was no longer listening to me.  Time to change my tactics and instead of speaking, I am listening.  Listening with true intention.  This is a game changer.

My husband and I leave on a long-awaited vacation early tomorrow morning.  With any luck, I’ll be laying on the beach in the sun by 2:00pm.  We have both crawled, limped, and added crutches to get to this point.  We need time alone together, the to-do list needs to stop, we just need to LIVE and not worry about if the tears will come, just accept that they will, and then move on to the early morning Bloody Mary.  There is a God.

I would like to thank my countless girlfriends for holding me up.  I would like to Thank Anne Moss, Donna, Nikki, Wendi, Nichole, Katie and many other family members for listening to my GUT cry, without knowing how to help me put together my heart again.  My parents always prove to be so strong.  I was grateful for this but mourned for them anyway.  Sometimes the act of doing helps when there is nothing else to change an impossible situation.  Thank you, Jennifer, for reminding me that God is listening and helping me turn down the chaos and noise inside my head.  That was truly a remarkable gift, I think it’s what saved me.  Thank you to everyone else who dragged me along and refused to accept NO as my answer.

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This is US.  My loving husband has carried me a long way.  Our time together has become like a valuable commodity, this is my BIG takeaway, my big gift – finally time alone together.  I can already feel the sand on my feet, and the neverending love in my heart.  It grows more with every passing day.  #marryakeeper

Christmas is coming, and I refuse to get FAT!

Having a hard time getting into the spirit of things this year!  I think this has to do with so much pressure to do so many things that I feel like a pressure cooker!  Am I writing?  Yes, and no.  I am re-writing, re-writing, and re-writing.  When I first signed on to this journey I felt the need to edit every word and to make it SOUND like me.  My ghostwriter being from an entirely different world had a rough time with this.  Her advice was to keep these blogs as much about ME, and my family so that by the time the book comes out perhaps they remember hearing the name.  I thought the idea was good for a different reason, you will “hopefully” be reading her words, but I insist that you hear my voice and remember the reason why the story was so important to tell.

Hereditary blood diseases can be mean a ton of unnecessary surgeries, it can mean huge fatigue, it can mean death, especially if you are unaware that you have one.  My greatest hope is the book empowers people to behave like blood hounds and take the time to get to know your family medical history.  You would not believe how important a through medical history is, and how much money it will save you if you can put it all together.  Some blood tests are not routine, so in order to identify what is going on, you have to dig deeper and get the help of a really good Hematologist!  If it goes on long enough misdiagnosed as it did for me for YEARS (41 to be exact), you are in serious trouble.  Surgeries that would be considered normal and easy to recover from will not be the same for you.  Complications will happen, you will be extremely fatigued, and your mind will start to go COO COO for COCO Puffs on you!  I remember thinking what the hell is wrong with me?  Why, do I feel like this?  Granted in my particular situation, there was some Neurology that needed to be addressed too, but I couldn’t help but wonder would I have gone to such a dark place mentally and emotionally if I simply had some answers?  I really don’t think I would have.  I am a fighter in the ring, and a cheerleader on the side for others.  Giving up has never been an option, and I wasn’t going to start then or now.

You see when you become a Mother at 19 years old, it’s not all about you anymore.  This fact alone has probably saved my life more than anything else.  When you look at those adorable faces you just can’t think about you first anymore.  There will come a time when that can happen, and if you waited until you finished college, worked at a job or knew yourself first maybe you have the upper hand.  I didn’t.  The honest truth is I had no idea who I was.  I had been wearing the mask so long, I let others figure it out for me.  I didn’t trust myself enough, so I always thought everyone else was right.  It wasn’t until everything was revealed to me that I started on the journey of who is Stephanie?  A rebirth occurred that blew my mind and I was so happy it did!  I think my children would agree with this as well!

Happy Carter is coming in the front door and that’s where I want to be, so, maybe we will finish this chat later.  A thought occurred to me at 1:00 a.m., but I could not drag my tail out of bed or sit up to write about it, but I’m going to so look out!  Young, passionate, let’s never wear clothes love, and responsible adult, secure love.  Is it possible to have both?  I think you will be surprised at what I have to say!

– Wearing the mask this week – Stephanie