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Messages - KathyD

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Spouse, Partner Loss / Re: Almost 17 months
« on: January 11, 2019, 01:33:42 PM »
hello - I have been reading these posts and all the replies and not surprised by all the emotions that were shared.  It actually was comforting to know that I wasn't alone in some of the feelings I have been having for the past 22 months since my husband of 35 years passed unexpectedly.  Thank you all for sharing.  I just wanted to let all know that I appreciate the sharing and that it helped validate my feelings.  My minister warned me that even though the first year is rough, the second year is worse.  I didn't understand what she meant at the time even though she was speaking to me from her own experience of losing her young husband with two young children.  She was right and that dawned on me about halfway through the second year.  Everyone else had moved on with their lives and we are still trying to figure out who we are without our loved one.  We are still figuring out how to move through the days alone (even when we have family around us.) Someone in the messages above mentioned that they were in a better place than they were previous months after the loss and that is how I look at things - even though I am still sad, still cry, still have meltdowns, I am dealing with things better than I did months ago. 

We will NEVER stop grieving - we will only learn how to live with it. 

Thank you for allowing me to be part of this and allowing me to share my thoughts.   I have posted my story a couple months after my husband Ron passed. It helped just to post that story.  I had almost forgotten I had done that until I was cleaning out my bookmarks.  It is somewhere on this site under my name in the introduction thread Reply #142 on: September 26, 2017, 03:50:58 PM if you wanted to read it.  I'm sorry I haven't been back sooner. Everyone here is very loving to all.   

My snow globe of life is still showing signs of snowing but it's not the blizzard that it was at the beginning of being solo.

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Spouse, Partner Loss / Re: Introductions thread
« on: September 26, 2017, 03:50:58 PM »
Hello
What brings me here is the fact that I need some help to get through my grief as it is consuming me.  My husband was a healthy, well-loved, fixer and mender with whom I was married for one week short of 35 years.  Two weeks before his death he developed the flu, after a few days I was begging him to go to the doctor and then a Mid March blizzard hit.  The "flu" didn't stop him from going out to snow blow a path to our barn so I could feed our colony of cats or drive bus on Thursday for the kids going back to school.  By March 17, one week after the start of the flu, he was fluorescent yellow when I went to see why he was still in bed.  I called the ambulance and they took him into the hospital. He was in acute liver and kidney failure. 

He didn't smoke, didn't drink, didn't do any drugs -prescribed or otherwise. As I said he was healthy.  Never sick. No surgeries.  no hospital stays.  the only time he went to the hospital was broken foot and broken ankle - one from work and one playing volleyball. 

We all were in disbelief that this was happening.  Then they told us that they found a mass in his abdomen and on both kidneys.  What!!???   He was healthy. He had NO SYMPTOMS before the "flu"  Within 7 hours in that hospital they sent him to Hershey Medical Center where the specialists were. 

Ron was a mystery to them as they did not know what the masses were and did not know why he was so sick. Unfortunately Ron apparently was in self denial and neglected to share with me some details of how he was really feeling up to March 17. They intubated him that day, we had our last kiss together and said goodbye saying we will see each other soon when he wakes up.   The intubation was done to preserve his airway because of the blood levels he had he was in and out of sleepiness and wasn't always coherent.   

That weekend we were called in Saturday into Sunday because he was crashing.  He was bleeding and his numbers were not looking good. My brother drove me and my youngest daughter who lived nearby to the hospital (why didn't I just stay with my Ron - why did I feel I had to work that night) Ron wasn't looking good. If only they knew what the mass was but he was not stable enough to do a biopsy.  Then a brave fellow (someone who went through residency) sat down across from me with Ron between us and said that my husband was too healthy and young to be in this state and because they didn't know how to treat the mass, he wanted to start him on high-dose steroids.  I immediately said yes do it. 

As the week went on Ron was responding to the steroids by getting better numbers.  He was on dialysis 24/7 since admission and was receiving blood products for the bleeding they didn't know where it was coming from (abdomen??)  On Weds they were able to do an ultrasound-guided biopsy.  By Thursday we found out that the mass was not cancerous but rather fibrous - scar tissue.  What?? Ron never had surgery or trauma to the stomach - how did this happen and why was it causing so many issues.  Apparently this mass grew encompassing some blood arteries and veins; enough to cause things to slow down and stop working.   He was off blood products.  He was making some urine on his own. We were starting to hopeful.  So many people were praying for him surely God would hear our pleas to help Ron.

Then Friday came.  the doctor called me and asked if I was coming in.  Yes, of course, I was there everyday for many many hours, short of sleeping there (now I wish I did) Things weren't looking good for Ron.  He started to bleed again and they had him on blood products.  They did an EGD to see if they could find where the blood was coming from.  They said things didn't look good - there was no visible injury - just blood seeping through the tissues.  It was basically the doctors telling me that there was absolutely no more they could do for Ron.  This was going to be the day that he died. 

Our two daughters, 31 and 29, just cried in disbelief. this week had been a bad dream and now it was becoming a nightmare or worse.  I called my brother to come (my only immediate family living) and Ron's huge family of 7 brothers and sisters (no living parents) some of whom had come to visit.
 The nurse suggested they call the other brothers and sisters as Ron was going to go fast and hold the phone to Ron (who was still intubated and basically unconscious) so he could hear their good byes.

Any family who had come to visit not knowing this was going down visited and then left the room so Ron, our girls and myself could be together one last time.

 I have never cried so many tears as that day or said so many "I LOVE YOU" "I've never told you enough how much I appreciate you."   The nurse made sure that I had access to Ron and short of getting in bed with him, I held onto him while my daughters were on the other side holding his hand and arm (the Nurse did remove many of the IVs to allow us access.)  He was till intubated by our request (we experienced the death of my mother after extubation and that is traumatic and I didn't want my daughters to experience that again)  The nurse unhooked the dialysis machine, most IV (left the pain IV in) and turned off the heart monitor in the room and left us alone. I did have a moment of panic that I was doing the right thing and reached out to the nurse to stop her from unhooking him but she just held me and whispered to me that I was doing the right thing and it was okay.   

The girls and I reminisced.  We told him how much we loved him and appreciated him and I watched as my babies had to watch their father pass away.   Because of the intubation it wasn't immediately known he had died except I knew.  I saw the tear that a loved one sheds when they pass. That didn't stop me from holding him, kissing him and talking to him.  The nurse came and told us that he had passed.  We remained longer.  I couldn't leave him, not yet.  I didn't want to leave him.  It was so surreal.

In one week we would have celebrated our 35th wedding anniversary.  Who does that anymore I told him.  We were happy together.  We raised two very fine daughters who were successful and happy.  Who will walk them down the aisle if they get married or help me babysit any grandchildren they may have.   Eventually, we did leave. As we were leaving to tell the family who were in the waiting room, the lights flickered while we walked down the hallway, as if following us.  We just looked at each other.  We knew who was looking over us.   

It's been six very long months since his death.  I still cry every night.  I still cry with memories of him and the what ifs.  I have good days. I have bad days.  My daughters and I remain close and we aren't afraid to talk about our feelings or about him.  We loved him so much and had such wonderful memories. They used to ask us how when we "fought" we always end up laughing at each other.  I told them because that is how people should "fight"  ending with laughter at how silly we sounded.   

An autopsy was done because we needed answers.  The doctors needed answers.  Turns out the large retroperitoneal mass and its associated clinical complications were the cause of his death.  they called this mass was "idiopathic sclerosing mesenteritis characterized by chronic inflammation and fibrosis.  it is a rare disorder which may affect men between the fifth and seventh decades of life."  Ron was 59 with no symptoms prior to the "flu"

of note, when researching this disorder, if caught early and diagnosed correctly (often misdiagnosed) it is treatable with steroids.  But can only be found on Ultrasound and/or CAT scan.  So if your loved one is having stomach issues and they can't find a cause, ask for an ultrasound and/or CAT to rule out this diagnosis.  It might only be rare because it isn't diagnosed correctly. 

Thank you for allowing me the opportunity to share my story.  Now to find an appropriate counselor to help me pull myself together and function.

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