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.

https://youtu.be/1SiylvmFI_8

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.

 

You can still be a wife, Mother, and employee…The trick is learning when it’s time to just let your body relax.

The above women are strong, powerful, lovely, unique and kind.

Free your mind, listen to these remarkable women

#LetGo  Click the link below!

The above women are strong, powerful, lovely, unique and kind.

Free your mind, listen to these remarkable women.

I hope that you can see this video. I still cannot watch it without crying. So inspirational!

How many of us feel that we are stretched too thin, over stressed, and simply cannot complete being perfection that is required of us women today. How many of us are sleep deprived? How many women do you personally know right now that is trying to accomplish such astronomical goals, that they fear we are losing ourselves?

In this day in technology, women are charged with huge “to do lists”. I would like you to take a minute and write a “what not to do list”. I am in no way suggesting that we give up our power or equality. What I am saying, is that women are still the center of the family. We still want to serve our husbands, and engage with our children. We need to cut back our lists and take time to enjoy the life we are living right now.

Life is so short. Take the time to love yourself, love others, and simply just BE.

#LetGo

ST- aka Mask of the Doctor’s wife

Credit goes to the #LetGo campaign started in the U.K.