Survival Tips

@dconway817

Well how sweet! I was hoping it would help.

Hey, here's another one, BTW . . . .

When my husband was, years ago now . . . Geessshh, can't believe it when I say that out loud or write about it . . . BUT . . . .

Before he was properly diagnosed with his multiple serious illnesses . . . he would sweat through our bedding, right down to the mattress. And, because I was trying to hold a full-time job at the time AND take care of him . . . I was finding him walking around at night, looking as though he had just taken a shower . . . sooooooo, I decided rather than "remake" the bed at 1:00, then 2:00, then 3:00 o'clock a.m., every night . . . . for months, mind you . . . . I started "layering" his side of the bed with, first, a fresh mattress pad, then a fitted sheet, then a top/flat sheet, and a lightweight blanket . . . all folded in half, of course. That way, each time he woke up, drenched, I would just pull off those three layers of soaked linens, and just wash them in the morning when I got up instead of trying to launder everything each time we woke up with him so wet and having to lie there in those awful conditions. Unfortunately, we had to live that way for months before we finally insisted someone had to do something for us, instead of telling us it was "just", "just", "just" . . . . Maddening, for sure!

@schmidty1212

LOVED your supportive words, my friend! THANK YOU!!! Sharing our stories and our experiences is something, I think, that makes the difference between losing our minds or (God forbid) the people we love (ourselves included) keeping something to ourselves that could help someone else.

We actually had a doctor tell us, "There's a reason they call it 'practicing' medicine. I say . . . . do your freaking job and "practice" it somewhere else! I know they're only human but, for pity's sake! Really? I can only surmise that many times "they" put their ego first (which I think happens more than not) OR they feel they need to dance like a puppet in front of the insurance company. Some of them are too eager to put their protocols and charts ahead of listening to the patient and/or the person who sees this stuff at home every day.

Like everything and everyone out there . . . there are good and players BUT, personally, I just wish it wasn't as hard as it sometimes is, beating the bushes, to find answers.

When my husband was going through chemo . . . granted this may sound terribly selfish . . . . BUT, everyone was falling all over themselves to get him everything from an extra blankie to something to make him more "comfortable", while I could have been a fly on the wall UNTIL, that is, a stomach injection would need to be given at home or a nutritious, inexpensive, tasty meal would need to be prepared. Until then . . . most folks could care less about me. Support and/or "therapy" of any sort for how I would need to take care of him at home wasn't offered . . . . . . had to be something set up for him before they would even consider such a thing for his wife of over 40 years . . . I couldn't believe it! Oh the insinuation was made, of course, that it was more than I could possibly handle and would they like to refer me to a psychiatrist if I was "depressed" about it. That's why I sometimes sound "resentful", even toward my husband at times about the fact that even HE wasn't someone I felt could turn to to help with all the stuff I was having to try and deal with on my own . . . I still feel that way, I guess, because he just, even now, can't seem to grasp how hard it's been . . . being told by friends and co-workers alike, "If you need anything", and then when you do . . . nothing but crickets.

I must sound like such a selfish, "whiney" witch . . . . but, for pity's sake . . . . where is a person supposed to turn when very little (if anything) is offered to the very person an ill person needs to survive the ravages of serious health problems.? I wish there was a group of some sort for people like us . . . . who are expected to: take care of ourselves, stay strong, exercise, get plenty of sleep and eat well while trying to hold a job, shovel snow, arrange for the lawn to get mowed, blah, blah, blah. I soooooo could have used help with all the nonsense we were going through, not only with the extra jobs at home . . . but dealing with all the hoops we had to jump through with the medical profession.

I think we all need to share what we've been through or ARE going through if any of us are to survive without being made to feel as though we're not part of the solution or need to take a pill to calm ourselves down.

I realize doctors are only people and the system isn't perfect anywhere BUT when something happens, that can lead to serious consequences . . . . change is required to ensure it doesn't happen again. And, usually, that "change" needs to happen from within the system by those who can change it. The rest of us, with all we have to deal with, can't do that. We're too busy trying to hold our lives together.

Thanks, again, for all the kind words. I really, really appreciate them!

@suppiskey2surv Dawn, yet another BRILLIANT idea. I will start that tonight! I have been stripping and remaking it each time my husband wakes. You should consider writing a book. Dana

@dconway817

Oh, I'm so glad I could help you out with that suggestion, Dana!!!!! Yeah, it's still a hassle to have to do all that laundry BUT, just throwing it somewhere, out of the way, in the middle of the night made my life (and HIS), so much more bearable. If you have enough bedding to do the job, it's worth it. AND, if you don't have it at the moment . . . consider buying some.

I also found some absorbent "chuck" sort of things on line that we put on our furniture to protect it during his many naps.

GOOD LUCK! Let me know how it goes.

Take care, hun!

@sillyblone

Oh, my gosh, kiddo! What a story! In time, some of these experiences become amusing, don't they? At the time, a person thinks how tragic they are . . . . but, then a person's sense of humor kicks in . . . probably long after the crisis is over . . . and then it becomes another (sort of) "amusing" story to tell.

My husband is on blood thinners . . . so, whoaaa! That one could have pushed me wayyy over the edge. As bad as you feel for him . . . sometimes you just want to take the opportunity to yell and take your frustrations out on him or someone else.

This story is one that I now find (sort of) "funny".

The night we were supposed to be celebrating our new furniture (before he was diagnosed in 2018 with a baseball tumor in his belly), we were going to have some wine and a frozen pizza for a late-night celebratory dinner together. Wellllll, to make a long story short (or as short as I can, but I will try) . . . he couldn't eat a bite of the pizza but sure could drink that wine. Haaaaa . . . first "funny" chapter of a story.

I looked at him, straight in the eyes, and said, "Get your sh*t together. We're going to the ER, again!"

Soooooo, we packed everything up in the car (sadly, before I figured out we needed to keep a packed bag in the trunk of our car) . . . . and headed to the hospital. After we're there for what seemed like an eternity, in the middle of the night, they did a CT scan and found the tumor, telling us it was most likely cancer. Of course, all eyes were on me to go home and get what we needed. I sobbed the whole 15 miles or so, with my window open, screaming all the way, "F" bomb after "F" bomb. When I finally got back to the hospital, they had admitted him and moved him to a hospital room already but I didn't know how to navigate the maze of departments there; so, as politely as I could, I told the Security Guard that what he was going to do that night was to escort me upstairs to find my husband, as I couldn't possibly remember his verbose instructions as to how to get up there.

Then, about a week after they took the tumor out, he contracted an abdominal infection before they were supposed to start chemo. I rushed him to an ER near our house that we had never been to before, where they told me I would have to drive him to the hospital after they made the arrangements. I had gotten him to that ER but I had to go home again and get what we needed for yet another hospital stay. So, I left the ER and went home to get our stuff (again, sadly, before I decided to keep that packed bag in the car). When I tried to find my way back to that ER, (which we had never really been to before . . . one of many we hadn't . . . Haaa) . . . . There had been a serious car accident, blocking the only way I knew to get back to that ER . . . . and I got lost . . . . Eventually, we ended up where we needed to go but that didn't happen without my use of the "F" bomb again, crying into the phone with the nurse trying to give me directions. When I found my way back, he was lying there with that familiar ambivalent look on his face, sheets tucked under his chin, and asked me, "Now what?" I had tears streaming down my face, barely able to speak . . . and felt like my blood pressure would probably cause a BP monitor to explode. We got to the hospital where they admitted him . . . AGAIN . . . only a week after they had taken that thing out of his belly and where we stayed for, I think about 3 nights . . . THEN, a couple of months later we get a bill from a doctor whom we had never even seen. That, too, is another story for another time, as this little text box is shrinking.

Grrrrrrrrr . . . lots of stories . . . . lots of, now, funny experiences but at the time . . . just awful!

After that whole mess is when I decided to keep that packed carry-on in the trunk of our car.

Seeeee, you are not alone in setting your keyboard on fire, girlfriend! Sometimes, I can't type fast enough to squish everything I want to say in a text box. Hope I didn't bore you. It helps to talk to someone who can understand. Thanks for making it this far through my rant!

@suppiskey2surv One thing I did not mention was I was screaming "I am his wife, get away as I can handle it". Of course he said I was rude. I did not care. I know what to do (actually they were all feeling sorry for the guy who was bleeding). I am pretty sure that they thought I was heartless. No, not at all. Just fed up with the stupid things he does that put him in danger. An addition to the story. We stopped to get gas and he told me the place was closed. I have driven on this particular Interstate so many times that I could tell you were to go and where not to go. Mind you by myself. He went in the restroom and took all the packing out. I precede to say why ???? He acted like I was the idiot. I said if you bleed in my car , it won't be pretty. I cannot begin to tell you all the dumb and foolish chances he has made! I hope you feel the fire that I am trying to explain. Your explanation was sad but parts sound like me. We will be Virtual Friends for sure! I can tell you are most likely fed up with healthcare and the way we have been spoken to.. We must Deaf , Dumb and Blind! Rudeness beyond your imagination. I have never felt that way before. Till the next time. Thanks for your post. Hugs and prayer's

Sure sounds like we've had almost parallel experiences . . . dealing with, at times, an extremely frustrating healthcare profession, husbands, etc. Sometimes I'm not sure who I'm more fed up with . . . feeling like it has all been up to me. I'm POOPED!! I last told him . . . "If you don't care, why should I?" So many times, even the doctors begged him to comment on how he was doing or how any of it was making him feel; so, because someone had to respond, and if I was there, I answered them as best I could. One doctor commented, "He certainly is 'stoic' ". One of my daughters was in the room at the time and said, "You have NO idea."

We've always been opposites, so dealing with problems (of any kind) has always been a cause for 'distance' between us. I always thought I was helping him deal with things, speaking for him, when he couldn't or wouldn't . . . but I think that was a mistake in a lot of respects. BUT, when his/our situation starts threatening our lives (i.e., our youngest daughter's wedding, our grandson's graduation, our home and our financial lives being threatened) . . . well, then that's when I feel obligated to speak out.

When I've left things up to him . . . . (i.e., the year they let him go with what turned out to be Stage 4 lymphoma in 2018, with them telling him that he just needed to use a "special soap" and he accepting their "solution") . . . . blaming what we were witnessing that whole year with a really strange "rash", he losing weight, blood results going wonky . . . . things just never are handled until all he*l lets loose.

I love him dearly, but there have been times that if I hadn't been there . . . he wouldn't be here today. I don't mean to sound like a "I know more than anyone" person but sometimes I DO. There was a night, also, at the hospital when he woke me up to say one of his eyes "hurt" and that he had a really bad headache after they had sped up his heparin drip to make up for them postponing a procedure. When I looked at the rate of the drip and how fast and how much heparin they were giving him, I called the doctor in immediately and made them stop the drip. The doctors, of course, looked at me in disgust and made me sign a waiver. Not 10 minutes later, he was fine. Had I not been there . . . he would have had a massive brain bleed.

Another time, years ago, when I was pregnant with my first child, who was breech, right up until my water broke, he convinced me to wait for him, sitting on the toilet . . . dripping away . . . . while he made himself pancakes. To this day, he says it was because the doctors told us not to panic. Ummmmm, welllllll, yeah . . . . they said not to panic but to get into the hospital immediately if my water broke. When we got there, the doctors scolded him for waiting as long as we did because her little foot was "out there", and when they did an emergency C-section . . . they had to revive her, as she was what they called a "blue" baby. Granted, I was a dumb cluck back then; but I've learned to speak up when I need to ever since. It's been a long, hard road of self-discovery for me . . . and I wish I had spoken up sooner . . . . but here we are today.

I love my husband, dearly. If I didn't, I wouldn't have fought as hard as I have for him . . . for US . . . . but with his serious health conditions over the years . . . my challenge has been, not only with doctors and the medical profession, but with him too. Things are a bit better these days, but he still just doesn't ever seem to see just how much harder things have been because, rather than dealing with things together, as a team . . . . we go into our separate corners with what feels like he's judging me and that he thinks his way is better . . . . so many more instances where I've tried to leave things up to him but when I do . . . . things just don't turn out well and then I'm left with a bigger problem than if we had just been able to deal with challenges TOGETHER.

One doctor, told me over the phone, that he should eat a banana when we went into the ER with his first PE. He, of course, was perfectly fine with that ridiculous "remedy" for the pain he was experiencing; but, I thought it absolutely ludicrous! I didn't speak up, like I do today, but that stupid opinion almost took his life.

Time after time (and there are so many others that I could cite) . . . I have learned to depend on my own assessments and trust my instincts. Things like his reaction to one of the chemo drugs they were giving him for the lymphoma that he was reacting to. I could tell he was having a reaction but he just laid there, perfectly quiet while I was witnessing him developing a rash and going into uncontrollable shaking. He needed the drug but I made them slow it down. His white counts, too, after a couple of chemo treatments started to tank so I asked them to give him something for it (a Neulasta patch) that he had to, from then on, have after every treatment. They were reluctant because of the cost . . . but when I told them that we would pay for it ourselves if we had to . . . they did some "checking" and prescribed it every time.

I'm not a doctor. I don't have all the answers to everything. It may sound as though I do, but I truly only have our best interests at heart when I push for things. To be honest, I think part of the problem is that he's learned (not always "respected") to just depend on me to do all the talking . . . always ready to say, "See. That was the wrong way to go about things", yet taking advantage of my "chutzpa" when it turns out for the best.

I honestly don't care what people think of me anymore. Doctors, family, friends . . . . even him sometimes; but, I just can't sit idly by and do NOTHING. Someone has to make a decision when poop happens so, if someone gets their nose out of joint . . . too bad. At least we'll be celebrating our 48th wedding anniversary TOGETHER next summer and he was able to dance with our daughter at her wedding and be here for all the other milestones we've shared over the years.

One doctor asked me if I was a nurse at one point. I just said, "Well, no, but I could be after all this." I love him. I love the life we've built and I refuse to let anyone take that away from us if there's a chance they just aren't looking at my husband with an objective amount of concern for us.

When I was fighting for an answer as to why his liver enzyme tests were out of whack, and I knew they were missing something (something that turned out to be a severe case of HEP C), I made a doctor take another look at his liver ultrasound as he was leaving the exam room and had his hand on the doorknob. He turned around, took another look and immediately asked us if our primary care doctor had seen the test results. Afterward, they later determined he was suffering from acute organ failure in the ICU, due to the misdiagnosed liver/kidney disease he had, depending on nothing more than the serum screening test they had run for hepatitis.

I realize this post is packed with a whole lot more than anyone could possibly ever want to read; but, if you've read it this far and can grasp the gravity of some of the horror we've both lived . . . THANK YOU!!!!

@dconway817

So, how did that bed linen thing work out for you last night? Did you try that? Sure hope it helped!

@suppiskey2surv it worked brilliantly. Thank you so much.

Oh, I'm so glad! YAY!!!! You are more than welcome!