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elvan Blog

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elvan

Ugly, ugly, ugly...

Posted by elvan Feb 17, 2018

I had to leave work early because of the pain and I got kind of sorry of the freaked out looks at my forehead.  Started with OMG, "did you fall?" Kept going on most of the day.  Got home and had wicked chills and fell asleep for about an hour...woke up looking worse than before.  The pain is ridiculous and STILL they itch but there is no way I would touch them.  My husband looked at me and said..."You have to go to the doctor."   There is nothing anyone can do...they run their course.  Lots of fluids, rest, stress control...yeah, that's not going to happen.  Just wanted to share my "progress"

with you...I am NOT leaving the house. Really hoping they don't get much closer to the eye.

 

Mike is miserable, he says he feels terrible and his depression is overwhelming, he cannot stay awake, I told him to SLEEP.  I am hoping he is going to start moving around more.  I will sleep tonight, at least I HOPE I will.  Weather was miserable all day but nowhere near as cold as they forecast so it just rained all day.

 

XOXOXO,

Ellen

I am hoping to get some sleep tonight because I need to get up early tomorrow and I have not been feeling well for the past couple of days...I am really sorry to say that late this afternoon after feeling feverish for days, an area on my forehead started to itch and then feel like someone was pushing a corkscrew into my brain.  I groaned as I recognized the symptoms I have had MANY times in the past...I have Shingles.  Hopefully, this will not be a long course of them but they certainly are painful and in precisely the same spot as they have been more than once in the past.  Fortunately, they do not look TOO bad...at least not yet.  I will try to keep from scratching them during the night and may put some ice on for a while to see if I can reduce the pain. I have been through this so many times and I cannot remember if anything ever worked...I CAN tell you that they run their course and that I have NEVER caught them in time to have an anti-viral medication administered.  I never recognize them until they BLOOM.  

 

Hope everyone has a beautiful Friday evening and Happy Chinese New Year!

Love,

Ellen

I am in a fragile state as many of you pointed out on my blog about watering my cheeks.  I am not watching the news, I have to completely step away and I know of many others who feel the same way.  I am not sure if that is good or bad but if I don't take care of myself, I will completely meltdown and do a Humpty Dumpty.  I do have to try to take care of myself, I am not sure how much time I can devote to that but I have to try.  There seem to be so many demands on my time and energy that I am going constantly.  

 

Today, Mike saw the primary care physician, she feels that his confusion and most of his issues in the hospital were from his "near death" experience and she says that time will tell whether or not the symptoms will get better.  He has gained 12# since his last weight at the skilled nursing facility and HE found that terribly alarming.  I reminded him that it was a different scale and that he was most likely in his pajamas and not wearing a jacket the last time he was weighed. He has a lot of swelling in his left leg which is the graft site, the doctor feels there is enough redness and swelling to start an antibiotic, I had asked for that when he was in the SNF but they felt that Bacitracin ointment was enough.  The next several weeks and maybe months will a blur of doctor's appointments and cardiac rehabilitation.  Guess I have my work as a taxi driver cut out for me.  

 

Again, many thanks to all of you, I will keep watering my cheeks for as long as they demand it.

Love,

Ellen

elvan

Watering my cheeks...a LOT

Posted by elvan Feb 15, 2018

It is no secret that I have a tendency to feel things pretty intensely, sometimes those things are not the same as what others are feeling.  My heart is broken right now…into so many pieces that I do not know if I can put it back together yet again.  I have listened to all of the coverage that I can stand about the school shooting.  I saw the shooter’s face today, he is 19 years old, his father died 14 years ago and his mother died in November, “probably from the flu.”  He had an on line presence with 219 followers and he talked about becoming a “professional school shooter.”  We need to mourn all the lives that have been senselessly lost…I may be alone on this one but I need to mourn this person’s life as well.  His life is over…no matter what happens now, it is over and while I know that the victims of the shooting had no choice in this, I know that this very young man was damaged perhaps a long time ago.  I cannot stop seeing all of the faces, the victims who died and the victim of whatever caused this to happen.  Please don’t get angry with me, my feelings are not something that I stuff anymore and let me tell you that more than one person tried to beat my feelings out of me, it did not work.  The feelings were still there after being beaten and after smoking more cigarettes than I can count.  Clearly, I am not wired the same way as the majority of the world.  Can’t help it and refuse to try to stuff things down anymore.  I am exhausted caring for my husband, serving him three meals a day in bed, pleading with him to PLEASE keep his leg up since it looks like it belongs on an elephant.  Both of my daughters are sick with what sounds like the flu…they are both in different parts of NY State, and my son and his wife just launched their dinner hours tonight.  There is no peace right now, no matter where I look.  Two years ago at this exact time of year, “Courage” aka Fannie died from the complications of smoking, she was 54.  I am sad tonight and I am going to sign off so I don’t spread it all over the place. 

 

For those of you who do not understand the title of my blog...it was what jonescarp.aka.dale.Jan_2007 told me back when I was only about 60 days quit and I could not stop crying...he said it was okay that I was watering my cheeks.

elvan

From CBGerber

Posted by elvan Feb 13, 2018

We haven't heard from Clare in a while, so I emailed her because she recently had a one year anniversary and joined the prestigious 6% Club.  I was worried because she had not posted.  I got an email from her and she is FINE, she is busy getting ready for a family wedding on March 3rd, she is smoke free.  She has not been able to sign in to her EX account and will contact Mark AFTER the wedding when she has the time to devote to figuring out the issue.  I offered to post a thank you to everyone who congratulated her and she asked me to please do so.  She will be back when things settle down.  She sends her thanks and her love.

Ellen

My husband is now home, hopefully, he is going to continue his recovery.  I have seen some pretty dramatic and disturbing mood swings and they are going to have to be addressed at some point.  He needs to commit to regular exercise and I am not going to be responsible for making him do that, I will supply him with the things that I use.  Supposedly, he did wonderfully at the rehab center but he says they stopped doing anything last Friday.  I am not sure how firm a grip he has on the days and I really never know if he is going to explode.  Yesterday, when I was driving him back to the facility after the home visit, he was seriously angry...apparently with me.  I had asked him if he had his seatbelt on, I didn't want to pull out if he didn't.  He reacted like a volcano exploding and he was hurling obscenities at me and acting threatening.  I chose not to engage and took him to the door of the facility where the occupational therapist met him and made sure he got out of the car safely.  I went back there later to bring him clothes to wear home and he seemed to have no recollection whatsoever of there having been any kind of discord between us.  I have done some research and found that some patients DO have significant personality changes for a while after this surgery, some longer than others.  I am hoping that being at home will help his mental recovery.  He made himself a sandwich for lunch and he is keeping his leg elevated which he needs to do.  He seems very calm at the moment.

 

This is a bit of a tense time, to say the least.  No, I have no desire to smoke.  I cannot even imagine what that would be like.  Our son is planning to keep a close watch on things...he has called me already to be sure things are okay.  He is aware of what happened yesterday.  My sister said that her father in law became very aggressive and threatening toward his wife after this same surgery, it did not resolve.  She was the only person he exhibited that behavior toward.  Might be a long road but I know that this too, shall pass.

 

Many thanks and much love to all.  Perhaps, I will be able to get a part of my life back soon.

Ellen

elvan

Here's the latest

Posted by elvan Feb 11, 2018

The skilled nursing facility is coming to our home tomorrow with my husband to assess any potential hazards to his discharge.  I am removing a rug from the hallway just in case they feel that is a concern...one of the cats loves to run through the house and leave it bunched up at one end.  I don't want to use double sided tape at this point because I have no plans to keep the rug long term.  I have cleared all paths that I CAN.  I cannot make the railings on the basement stairs accessible because the things blocking the way are too heavy for me to move AND I have no idea where I would move them to...my son says that he and his father have talked about it and they are both confident that it can be done fairly quickly...after he is home and can offer some direction.  In the meantime, Mike will have to agree not to go to the basement until the stairs are made safe.  After the home visit on Monday morning, the tentative plan is to discharge him on Tuesday afternoon.  My son said he will help with the move...he has accumulated a lot of things in his week long stay there.  He texted me at work yesterday and asked me to bring things that he wanted...they were all heavy and difficult to navigate in pouring rain...BUT, I took them.  When I got there, he said he had been so worried that he could not stand it, he wanted to know where I had been.  I told him I had been at work...we had discussed that at length on Friday.   He said he thought I got out of work at 3:00...I get out of work between 4:15 and 4:45, I have ALWAYS gotten out then.  There is a giant clock in his room there facing the bed.  I know that he is frustrated and depressed and that he feels like he is trapped there...I keep asking him to try to be patient for a couple more days.  He is close to being hostile toward everyone at this point, thinking that he is effectively masking it in sarcasm.  I told him before I went there that I would bring the things but that I absolutely could not stay because I needed to get home.  He said that he understood and then when I got there, he wanted me to sit down on a chair next to the heater...it is like a blast furnace and I cannot sit in that room and breathe.  I explained again that I had to get home, that I needed to feed the cats, have something to eat myself and get some rest.  I told him that our daughter in law was planning to come with our step grandson...to work on a Star Wars kit they brought him.  He asked if I could explain to them that he was really tired.  I told him that HE should do that.  He is complaining and complaining that he is tired and sleeping all of the time.  Part of that is recovery from the heart attack and the surgery, part is depression over being there and the recognition of his mortality and another part is the withdrawal of his ADD medication that may be contraindicated following the heart attack.  At this point, the jury is still out on that one. 

 

I am still exhausted and overwhelmed and feeling ambivalent about his return home...however, I do believe that he will respond very positively to the cats and to his "stuff."  I am just worried that he has become very critical and demanding at this point and I am hoping and praying that I can handle that.

 

I apologize for not updating and for not responding to all of your amazing and loving comments and for your prayers...believe me that they have helped me more than I can possibly express.  Right now,  I HAVE to take care of things that are happening here, one day at a time.  I am signing in to EX and reading when I can and occasionally commenting.  I just cannot be as active as I was...my presence is likely to be quite limited for a while.

 

Love and thanks,

Ellen

elvan

Hitting a wall

Posted by elvan Feb 5, 2018

I cannot even think straight at this point...I cannot sleep, there are too many forms to fill out and they have very short windows of time for me to do that.  I am trying to find all of the documentation that they want and, of course, it is all over the place.  My husband's business is not close to being ready to do taxes this year so they are going to have to base this on last year's Federal return and I cannot imagine how they would have any issues with approving some assistance.   I spent way too much time on the phone this morning talking to family members and I keep telling them that I cannot do this...I try to let one family member know and I ask that they pass along any news.

 

My husband seems so far out there to me, I cannot tell if he is trying to be funny or if he is really off the wall.  He is most definitely making inappropriate statements, not offensive statements but immature and strange comments.  Once I submit all of these forms...I am sure they will somehow want more but I will feel as though I have done whatever I can.  

 

Thanks for all of the support, the prayers, the love, and the understanding of my need to be absent most of the time.

I cannot begin to tell you how much it means to me.

 

Love,

Ellen

elvan

Exhausted but hopeful

Posted by elvan Feb 4, 2018

My husband is now in a Skilled Nursing Facility very close to home.  I am hopeful that some of his confusion is going to lift soon...he will be lucid one moment and then entirely out to lunch the next.  I have to keep bringing him back to reality. He is certain that some hallucinations he had actually happened, it is disturbing, to say the least.

 

I want to thank everyone here for the prayers, the love, and the support.  I miss you all SO MUCH.  I am not sure when my life will settle but please know that I am thinking of you and that I am here as much as I possibly can be.

 

If you are new here, please believe that we all want you to succeed and that when we tell you that it will get better the more smokefree days that you have...we are NOT making it up.  There are going to be some rough spots here and there and they may even feel like they might never end...they WILL.  You need to nurture your quits and know that you and only you are the one who can help them to grow stronger every day.  We will help you in any way that we can and we will offer you advice based upon our experiences.  If you read enough, you just might find something that will work for you.

 

Going to shower, shuffle some papers, pay some bills, and probably pass out.

Love and hugs,

Ellen

elvan

Another quick update

Posted by elvan Feb 1, 2018

Mike has been moved to a step down unit, he is still confused and disoriented but better than he was.  He was walked 40 feet twice today and I was told that he did well.  I did not see him today because I had to take our daughter to the train in the other direction.

 

The nurse I spoke to said he really needs skilled nursing and that he should not come directly home.  He said that he would be way too much for family to handle.  I know that he is going to be very, very upset but I think that it may be best for a short time and they said it could be local rather than where he is now.

 

I am exhausted, missing all of you more than I can possibly express.

Love,

Ellen

My youngest daughter wants to go with me to the hospital first thing in the morning...leave here at 7:00 and see if we can talk to the doctor who has been incredibly elusive since the surgery.  The nurse this afternoon said he may have an ICU psychosis...they medicated him today with THREE anti-psychotic medications...I also found one of his pain pills on the floor.  I gave it to the nurse and I was very, very polite, I asked her if he had perhaps missed half a dose.  I HATE the pain medication he is on, he gets more and more agitated when it is given.  I have asked four nurses to please request a different medication because he is seriously out of his mind.  He is intensely angry with everyone but mostly me.  He glares at me and tells me that I must be nuts.  I told him that I won't argue that point.  My back is killing me and my poor shoulder, chest, and arm are throbbing from the cane.  I need sleep but it isn't going to be tomorrow.  My daughter HAS to get back to Brooklyn because of her job...she has been working from here but she needs to be at her own home base.  My son took me to the hospital today...I honestly think I do alright alone but they are coddling me.  She needs to catch a train or a bus on Thursday and it won't be until after dark, I cannot drive in the dark, I cannot see. It is an hour and a half away.  Her brother says HE will take her IF she asks him.

 

I spoke with the caseworker and we absolutely cannot qualify for Medicaid but she is going to see if there is any way to qualify us for the hospital's private charity.  I will have to submit reams of paperwork but I will do that if they can help at ALL.  She said he might qualify for Medicaid for skilled nursing or rehab but everyone is fearful of how much more confused he might be if he is not in his home environment.  I CANNOT care for him alone, I accept that.  He is a big man and I am a bent little woman.  I am terrified that they will have to restrain him again tonight...basically the medications are chemical restraints.  He is SO far out of it. This is so incredibly stressful, thank GOD that I don't smoke, I would be puffing my way into a grave.  

 

I have to call the hospital and see what is happening tonight, my daughter wants me to make it clear that I want to speak with the doctor tomorrow.  I am so overwhelmed...jonescarp.aka.dale.Jan_2007, I tried videos and books on tape which he normally really likes but he cannot stay still or listen or watch anything, he is clearly psychotic at the moment and I cannot reach him.  Yesterday was BETTER.  My son thinks I should rest tomorrow, my daughter really wants me to go with her to the hospital.  I think I HAVE to go and if we go really early, I should be able to rest in the afternoon...I HOPE.

 

Love to all...Youngatheart.7.4.12, I laughed out loud at your PT experience, forward or backward.  PLEASE rest when you can, big hugs.

 

Ellen

elvan

Update

Posted by elvan Jan 30, 2018

I got a call before 8:00 this morning from my husband asking him to come and pick him up and telling me what he wanted me to bring.  I told him that he had not been discharged and he insisted that he had.  I told him that the soonest I could get there would be over an hour since the hospital is that far away.  He had no idea where he was...I called the hospital and spoke to his nurse and she said he had a very bad night, he did not sleep at all.  I asked her if he is being discharged from ICU to the step down unit and she said she did not know, the doctors were just making rounds.  She thinks he just needs sleep...seriously?  I cannot take him home when he is confused like this, I cannot handle him alone. I have a bunch of paperwork to finish before talking to their social worker there...it is supposed to happen today but nothing else has happened on time.  I am sleep deprived and in so much pain that I can hardly walk.  My son is going to the hospital with me very shortly.  We will TRY to calm him down...maybe he will be sleeping when we get there....with any luck.

 

Thanks for all of the prayers...I was astounded to hear that Youngatheart.7.4.12 was released last night after P.T., things have changed so dramatically since I worked.

 

Love,

Ellen

elvan

Mike and youngatheart

Posted by elvan Jan 29, 2018

I heard from Emily that Nancy's surgery was so late this afternoon that she would probably have to remain in the hospital overnight.  I had sort of hoped she would stay overnight so she would have access to pain control.  Emily said the surgeon said that everything went well.

 

Mike is very slowly coming around, he is very confused...they have not moved him from ICU because of that.  He did show some signs of orientation today when I was visiting, he is in terrible pain and is having a rough time remembering that he cannot pull himself into a sitting position using the bed rails and he cannot push himself up using his arms either....both of those moves endanger the sternum.  He hates the coughing and deep breathing and they have to do respiratory treatments on him to force him to cough.  He has not walked more than a few steps since the surgery.  They said he is very weak.  They have suggested a Skilled Nursing Facility stay but I am going to let him make that call.  I think he will recover more quickly at home.  I have gotten intercoms for him to be able to call for help if he needs me, I have no intention of being far away and we should be able to get home health care assistance.  We just have to see how things work out.  

 

I am pushing and pushing and pushing...I spent a great deal of time trying to find a parking place in the parking garage today, four times around over six floors...no handicapped places available.  I ended up having to walk a long distance and having to suck up exhaust fumes.  I have been coughing most of tonight.  I drove myself so I had to walk and walk and walk...normally, that would be GOOD.  Exhaust fumes are NOT good...neither are the cigarette smokers hiding out. One had smoked on the elevator before I got on.  I was infuriated.

 

Love to all...prayers for Youngatheart.7.4.12

Ellen

elvan

Latest development

Posted by elvan Jan 26, 2018

I went to see my husband this afternoon and my son said he had been asking for me all morning.  He is NOT in his right mind...he is completely disoriented, trying to push himself up in bed...he was warned prior to surgery that he CANNOT do that because he will separate the sternum.  He is in terrible pain, they discontinued his IV pain pump because that is their policy.  They gave him pills for his pain while I was there and I watched him getting more and more agitated within 20-30 minutes.  He is swearing at people, trying to get out of bed, talking about the fire and he says it was "clearly" arson...WHAT????  I stayed all afternoon and then I got the feeling that my being there was contributing to his agitation and most definitely not helping me.  I have HAD to use a cane the last couple of days because my back is so bad and my balance is completely off...as a result, my forearm is swollen and tender along with all of my joints.  He is not deep breathing and coughing and they HAVE to get them to do that...he may have one chest tube pulled tonight but I am not sure, they said his pain would be somewhat better after that.  I know that when I had my lung surgery, the pain was significantly better when the chest tubes were removed.  I called the unit tonight and spoke with the nurse in charge and she said that she believes he is experiencing anesthesia delirium and she thinks it is entirely possible that seeing me made him more agitated.  I told her I am not coming back tomorrow, I HAVE to get some rest, she said that is certainly understandable.  I am so tired and so overwhelmed...I need to be sure the house is as ready as I can possibly get it before he comes home.  I also need to make sure that I am ready.  She said he could be like this through next Wednesday so I told her he is NOT coming home like that.  I tried to meet with the social worker today but she was off. I will have to talk to her Monday.  I will also check into home care, I cannot do this drive every day...actually, my daughter has been doing all of the driving but she is not going to stay forever.  My oldest daughter and my granddaughter left for NY this morning.  My granddaughter starts classes Monday and my daughter is working double shifts for the next four days.  My youngest is still here, she does not know for sure when she is leaving.

 

That's the latest...I cannot WAIT to have my life back, even if it is forever altered, I need my home and my cats and my exercise bike...

 

Love and thanks,

Ellen

elvan

Another update on my husband

Posted by elvan Jan 25, 2018

I got a call from my son, he says he is spending the night there because his father is so disoriented that he just cannot stand leaving him...he says HE will press the button for the pain pump if he has to.  A few minutes later, he sent a text saying that the nurse who is caring for my husband until 11:00 said HE is fine with my son staying but he does not know about the next shift...THEY may make him go to the waiting room.  He does not know for sure.  Someone outside asked to bum a cigarette and my son said "sure" and then realized he only had two cigarettes left...sorry but that made me laugh.  

 

I think it is incredibly generous of him to stay...his wife took the car home so he has no car...can't go get cigarettes.  I will admit that I feel better knowing he is there.  My husband is SO OUT of it...begging for help, crying...he is in terrible pain and he is not handling it well.  Our son wants to see if he can keep him sedated until at least this part passes.  He has an incision from just under his chin down to his naval and it is wired together on the inside...holding the sternum together.  The skin is stitched AND glued.  He looks like he has a zipper.  

 

I want to tell all of you that he quit smoking in 1989...they made sure to tell us that two of the grafts came from his legs but one came from the mammary artery and that ANY form of nicotine would close that artery off.  He has been known to occasionally chew Nicorette gum as a stimulant...that is OVER.  He cannot have nicotine at all.  Just in case you think nicotine is safe...think again.

 

I am exhausted and in more pain than I can describe...my back is killing me and I have been using a cane so my wrist and shoulder are not happy with me.  I so want to sleep tonight...I hope and pray that I can.  Seeing my husband like that, crying and saying "help me, please" is EXACTLY what he was saying when he had the heart attack and I was trying to get him to the bathroom.  No one at the hospital can believe that I was able to get him there...let alone restart his heart.  Strange things happen, don't they?  My love and thanks to all of you for the prayers.  He will be in the hospital for a minimum of another five days...longer if he has any complications.  I am going to bed.  

 

Thank you so much, my incredible family.

Love,

Ellen