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Were we separated at birth? Sure sounds like it. Haaa.
Your words made me do a little self examination. You're so astute in, basically, raising the question, "Who is/has resented who?" My husband has admitted that he used to resent me more than he does today in rejecting some of what we've been/are told and in doing my own research and questioning. But he admits that it has saved his life many, many times. He's told me that he thinks we should have trusted all their medical expertise and diplomas at times. And I suppose I have, and still do, "resent" his inability or unwillingness to talk to "them" more, not to mention talking to me about how it has affected him . . . both physically AND emotionally. So, I admit that I should work on some of that a bit more and realize he's just unable to add another layer of something to what he's already dealing with.
Boy, you sure have been through a lot yourselves! Sounds like you've had to board the same sort of rollercoaster we find our ourselves on sometimes too. Makes me nauseous 🤢.
Things are, thankfully, at a pretty quiet point for us right now with them telling us things look stable, but that's actually what sometimes bothers me more, in a lot of ways. It's sort of like sitting in that seat on the rollercoaster, climbing to the top when you can see how high that next rise is, teetering there, and looking down toward how far a drop awaits you. Thus, the reason why I've decided it's better for me not to even get on that dang thing in the first place anymore. Putting myself somewhere on middle ground, avoiding that "drop", has leveled things out for me.
My husband's medical pattern has usually been things seem to resolve and everything looks stable for a while but then something explodes to set it all on fire again and things get serious. Just when we've started to think everything's okay, something happens and we're back on that dang terrifying ride. I know I'm probably preaching to the choir here but it helps to know that there are those who understand just how scary it is to get aboard that carnival ride. 20 years of all those ups and downs has been horrifying and so horrifying. It's taken such a toll on us both. And because it's seemed, at times, I've been in that little seat on the wildest ride we've ever been on, facing all of it by myself and all it involves, from keeping our lawn trimmed to preparing meals and keeping watch over how and what they're putting into his IV drips at the hospital or chemo clinic, it's just becoming too much for me to think of having to do it again. I've let my own health, at times, suffer because of it, which at 67 now, I simply have had to realize cannot happen any longer. I now realize that I will simply have to set certain limits as to just how much I am able to do. He, too, has had to do the same. He'll be 70 next month and has had to take a look at what course of action he is willing to take if/when we may have to face another health challenge. Hopefully, things have screeched to a dull roar for now. I hope the same is true for you and your wife. Finding this forum, for me, I think will be a place of comfort and support. It certainly has been so far.
THANK YOU!!!
Replies to "@schmidty1212 Were we separated at birth? Sure sounds like it. Haaa. Your words made me do..."
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@suppiskey2surv this is exactly why I thought this group would be a healthy outlet for me! To find out that my experiences are unexceptional and that others go through the same things that I go through. We have so many similar feelings/experiences. To the point about your husband displaying signs of resentment for you questioning the medical professionals: I applaud you for being his advocate. Times have changed and we should no longer look up to doctors as demigods. I came to the realization throughout my wife's journey that they are human, make mistakes just as much as any of us, and are not smarter than me. They are the subject matter expert in their field but sometimes they might be a little too analytical or cease to step back and look at things from a common sense perspective. My example is actually from my own medical issue and not my wife's. During an annual checkup my cholesterol came back high so they treated it with atorvastatin. OK, makes sense. It IS the go-to drug to treat high cholesterol. However, during follow ups my liver enzyme results we coming back elevated. I tried so hard to draw their attention to the correlation between my liver enzyme results being elevated and when I started the atorvastatin and they responded that while the enzymes are high, they weren't dangerously high and atorvastatin is a good drug for high cholesterol. I couldn't understand why they were pushing atorvastatin on me so hard. Is this the ONLY cholesterol medicine in the world? There are no other options where I could have my cake and eat it too (reduce my cholesterol but not damage my liver)? I pushed and pushed and finally the PA agreed to put me on Ezetimibe and retest after a few months. Sure enough, at the next blood test my cholesterol was good AND my liver numbers were good. So it was possible to find an alternative medication that didn't also cause elevated liver numbers. Had I not been willing to advocate for myself and had just taken a "the doctors are always right approach " I would never have achieved the outcome that I did. So I am a firm believer in questioning the doctors. I have also discovered that doctors also sometimes are only knowledgeable in their area. When we first started seeing cardiologists for my wife's heart failure, the cardiologist looked back at her history and stated that her blood pressures had been consistently high in all of her clinical visits dating back 10 years. He was actually pretty angry that no one had raised it as an issue. But most of her history was with nephrology. So what I learned was that when the kidney team sees a blood pressure of 145/85, they simply record it, don't even blink, and move on to doing the kidney stuff-doesnt raise alarm bells. But if you were to go to the cardiology team with those same numbers they would be freaking out saying, "We need to address this immediately! This will have a bad impact on your heart of not resolved ASAP!" So they're not bad people, it's just that they only know what they know and their knowledge can often be limited to their specialty area but we somehow expect them to know it all when in reality that is an unrealistic expectation. Your comment about the IV hit home with me too. I saved my wife from getting an unnecessary iron infusion before. They had already given her an infusion a week prior at the Dialysis center but for some reason the ambulatory infusion center didn't see it in the computer. I think you are doing all the right things! We relate on so many levels. I am happy that you're moving along at a dull roar right now but I totally get the feeling that some issue is right around the corner and even during the quiet times you still feel on high alert. Thank you for trusting this community with these very personal feelings and stories. Hearing others go through the same things helps so much!