I need some help/advice- LONG POST!

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Allisa35

Member
Julie, sorry to hear about all your troubles. I totally understand how you feel saying he doesn't care enough about you to take his meds. I think that is a reasonable reaction, but I'm sure he's not doing it to hurt you.

I have always been a pretty compliant patient with a few exceptions. I know it doesn't sound like much to say to take a 15 minute treatment here, or get on your vest for 20 minutes here, TOBI next, etc. I know they are not long intervals of time, but it does take its toll on you when you have to do it every day of your life. I've been doing my treatments since I was 3, but there are days when it just takes everything I've got to put that medicine in the neb cup and take my treatment. There are just days when you REALLY don't want to do it (but I always do). So, in that respect, I can totally understand how Mark feels.

Maybe, after the babies are here, he will start to realize how important it is for him to stay healthy. Maybe if you just don't say anything to him for a few weeks, maybe he will start doing it on his own without you having to remind him. Probably wishful thinking, but you never know. I know the more my mom used to "remind" or nag me about things, the more I would procrastinate.

Would he be willing to speak to a counselor? We have a social worker/counselor that comes into the clinic for the patients to talk to. I don't know what you have there, but maybe that is something that would help.

I hope you both can get this worked out. You certainly don't need the extra stress right now. Good luck!
 
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vestgirl

New member
Hey Julie!<br>
<br>
I'm sorry that Mark has been acting like that lately and not doing
what he needs to be doing to take care of himself. My boyfriend,
Hunter, and I have had the same "tiffs" as I like to
call them. I've thrown the whole, "well you don't know how it
feels to have Cystic Fibrosis" in times of frustration. He has
come back at me saying, "well you don't know what it is like
to be the person in love with someone who has Cystic
Fibrosis." That comment really made me stop and think what it
is like to be on the other side. I guess that living with
Cystic Fibrosis you want to try to be as normal as possible.
I have gone through phases of neglecting my health needs
because of the past times that I have done all of my treatments and
ended up getting an infection. My doctors had said that maybe
I was overdoing it, but I think that its just the disease
process. Sometimes I feel as though after all that work that I
have done, it is pointless because I get sick. But then I come
to my senses and I tell myself if I would not have been doing my
treatments it could have been worse and I could have had more
infections. My boyfriend always tells me to "please do your
treatments for preventative reasons." I like that better
then being told you need to do it, you need to do it all the time.
Also, another statement that Hunter has made was if you aren't
in the mood to do it for yourself, do it for me. The fact that Mark
goes to the gym is great for his lungs though. The gym to me counts
as a treatment. I'm sure Mark will come around and stop being
stubborn. He has to remember that he also has three triplets that
he is going to have to keep up with. Congrats on the babies! Mark
is really lucky to have someone like you who is supportive.
    <br>
 
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kayleesgrandma

New member
I think Allie hit it right on the head! I see nothing wrong with using the trump card of losing him...ask him what does he want you to tell his kids if he's gone? To me Mark's not doing his treatments is like a woman smoking while she's pregnant. He knows what's good for him. I also think the others are right about his frame of mind right now. This whole "I'm having three babies at once" can be overwhelming for a "healthy" father, much less Mike. I think you handled this situation really well, and behaved as an adult--but I know you wanted to just scream! And shake him! Hope he comes to his senses.
 
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Shoshanna

Guest
Julie,<br>
<br>
Please, please, please don't take this the wrong way as it seems
like you really love and care for your husband, but I couldn't help
feeling like you have more of a parent/child relationship than a
partnership as two adults.<br>
<br>
You ask how you can get Mark to take his meds and be compliant. My
advice: stop being his mother. Truthfully, if I were him and I saw
what you wrote on this site I'd be furious. He is a grown adult and
maybe he's OK with the whole CF community chiming in on how he can
better care for himself, but please respect his dignity and
self-respect as a man. I know when my husband nags me about my
meds/treatments I don't feel empowered or independent. I feel like
a child and I regress which is what I think Mark is doing. Try to
take a step back and give him some space.<br>
<br>
Honestly, I think when your children are born his commitment to his
health may change. It's sort of a wake up call of how desirable it
is to stay healthy and alive. But be aware that even your twins
can't change your husband...nor can you. It lies within him. You
can analyze all you want as to why he does or doesn't do things and
you can nag all you want, too. In the end, he has the right to make
his own choices...you are not his parent and he is not your child.
Yes, you made a deal and obviously Mark can't stick to it so he
never should've made it in the 1st place, but what's done is done.
Move fwd.<br>
<br>
Funny thing is, this may be more about you and your fear of him
dying than it is about his compliance. Maybe work on how to lessen
your fears rather than be on him and give it some time.  In
the end, he's the captain of his own ship and there is only so much
you can control.<br>
<br>
Just my opinion (though you may hate me for it.)
 
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Scarlett81

New member
OMG! I have some strong opinions on this topic.

Firstly, I think it is totally understandable that you posted this here-yes maybe it is being mother-ish as the last poster put it, but you are desperate right now and this is the only place you could turn to. This is a support community after all, and I think its good for you to ask for help in life. There's nothing wrong with that. My husband talked to a therapist 2 times and my doctor once also (behind my back) about my not doing my meds. I found out later, and at first thought was furious, but I instantly realized he desperately loved me and was scared.

I went through MAJOR issues in taking care of myself a few years ago. Probably 5 or 6 months went by without ever doing a vest treatment. My family whined at me for ages about it, my husband, doctors, ect and each time I just thought-Mind your own d*amn business! Then I had a bad health scare that pushed me to start taking 'so-so' care of myself. I saw good results. So I got a little better. Till my doc said that maybe someday I could have a baby. Then I started taking care of myself 100%. That was a year ago. And here I am.

My point is-you need a motivation. I know what you're thinking, my husband said the same thing-Shouldn't I, your spouse, be enough? I don't know why, but it's not. It's not about love its about denial, depression whatever. Kinda like an alcoholic.

I think Mark is either:in denial about his illness, depressed, or just showing typical little boy symptoms he hasn't grown out of yet. (I can speak like this b/c I myself was acting like a selfsih spoiled little girl.)

As far as saying he takes care of himself by, eating right, working out, ect. Well those are easy things to do. He's doing what the typical American 20-30 yr old guy does. Guys like exercising usually, right? Doing 2 therapies a day is hard. Going to the doctor every 3 months for 'the works' is hard.

He needs to find his motivator. Whether that is his children, which it probably will be, or the fact that he'll lose his life if he doesn't change. It's very much an addiction-like telling a smoker they have to stop or their cancer will worsen.

Everyone will have an opinion on what to do. Do nothing, scream every day, throw his meds out, on and on. Mine is, this is a serious problem. And you are about to be parents. It has to be adressed. This may sound extreme-but its the only thing that worked for me:My husband and a therapist talking to me together when I was unprepared for that discussion. Reading about others with Cf dying at my age. And a bad health scare-also seeing the good results when I did work.

To sum up, it took me a while to see that this wasn't a little issue. It was an issue of life or death. I could choose if I wanted to live or die. I just needed help to sort out my crazy mind-strict doctor and good therapist. I was depressed and I didn't care back then.

Sorry if this post seems strong-I just feel so passionately about this topic, b/c I went through it. I really hope you can find your solution. You both have so much to look forward to! Lots of love and hugs.<img src="i/expressions/heart.gif" border="0">
 
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Momtana

New member
Julie, having a baby changes so much about the relationship between the parents. Many couples begin to talk about how life will change: responsibilities, relationship, intimacy ... when the baby arrives. If you haven't, this might be a good time to look to the future and talk about how your life will change with three babies. (e.g. Who will do the grocery shopping?) Consider this part of your own prenatal care. Our local midwife always includes this discussion in her childbirth classes. Please take care of yourself so that you can continue to be pregnant for many more weeks.
 
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lovingBenandCambree

New member
I haven't read all of the posts, so I am sure that I will just be saying something that has already been said, but I'll give me input anyway. First, this has nothing to do with you or about you. This is Marks thing and only Mark can make that decision to do something about it. He sounds a lot like my brother that I get so frustrated with. My brother has always had good lungs, in the 90's until last week when he did PFTs and went to 73 FEV1 and 81 FVC. It was a hard reality check for him. My brother is one that is in denial about that whole CF thing. I don't know that Mark is on that same level or not. Thats not my call. I just want to give you my experience. I have always been really compliant with nebs and everything. Exercise was what I have always struggled with until I had Cambree and nearly died, I exercised a bit while I was pregnant with her for her sake rather than my own. Then after I had her I knew to get back I needed to hit it hard. The thing that I kept telling myself was "this is 40 minutes out of a 24 hour day that I am helping to keep me here longer for Ben and Cambree." That is what has helped me. We all have to find that something that will give us that motivation. Cambree did it for me and hopefully these babies can do it for Mark, but it is up to Mark and if he still chooses not to, it isn't because he doesnt love you and the babies, it is what he has to go through and eventually I pray not, but he will find out the hard way what he needs to do to stay healthy. It all hits us at one point or another. Good luck! Focus on you and the babies right now and let Mark do his thing hopefully if you don't make it an issue he will not fight it as much.
 
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LisaV

New member
I'm sorry, Julie. It can be frustrating and scarey when your husband doesn't do his meds or treatments as prescribed.

(Been there and done that.) Rip obviously took pretty good care of himself over the years or he wouldn't have lived as long as he did, but every so often he would like "take a vaction" from his regime. At first when that happened it would make me crazy! Over time I just sort of shrugged and knew it was a passing thing.

I have no new or particulary insightful thoughts about this. I can tell you want I did. I just let it go. Told him that I was scared when he didn't do his treatments etc because I was afraid that he would get sick and die sooner than necessary on me. (Just as background once or twice, not on a daily basis.) More frequently, I told him I needed him lots abd told him that I respected him and trusted him to manage his illness the best possible way for him. Told him he didn't need to be "super lunger" for me to love him.

Mostly I just loved, respected, and accepted him as he was -- and let him know that. Then I focused on maintaining a healthy lifestyle for myself (sometimes focusing on his issues was a way for me to avoid focusing on mine) and enjoying our marriage as a marriage of equals.

One thing I have noticed over the years in talking with spouses of folks with chronic illnesses, is that the marriage usually is happier and psychologically healthier when the "well" spouse doesn't take on the role of caregiver, nurse, or mom. (Nobody wants to be married to "nurse ratchet" and noone really thinks of a noncomplient "patient" as a sexy eequal spouse. And control issues in a marriage really suck.)

So try to stay focused on what attracted to you to him before you even realized he had CF and before you knew what the treatment regime should be -- and before you became enormously pregnant -- and before you both became parents-to-be. Let him take the lead in his life - be the star of his life - make the choices for him in his life. Yes, what he chooses and does effects you and the babies, but even more importantly it effects him. He's really got to feel like HE is in charge of his life and has made the important choices himself or later or he'll feel like he's just a minor actor in someone else's play (not a good feeling at all).

He is who he is. You are who you are. Try to celebrate that instead of changing each other. Hey, it worked when you first met, why wouldn't it work now?

Keeping you in my heart.
 
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julie

New member
Thank you to everyone for the continued advice and suggestions.

Shoshanna, I do appreciate your post. I didn't take it the wrong way and I certainly don't hate you for your opinion. I asked for help and advice and everyone has a bit of a difference of opinion and suggestions and just because yours isn't the "norm" and you pointed out something others really havent, doesn't mean I don't want to hear it. Thank you for having the guts to post it.
I don't need reminding that I'm not his mother, but you mentioning that my post sounded that way made me realize that If I feel that way sometimes, and others see it too, it's probably there adn I need to back off because the last thing I want to do is have a parent/child relationship with him. He is my husband and I love him dearly and simply want the best for him. But you and everyone else is right, I can't force, or make or mainpulate him into doing his treament. He either will or he won't, and for whatever reasons... they are his own.

And you are right, I am scared about the future too. Allie and I have had many talks (thank you Allie!) about loosing a husband with CF. I'm scared. He's healthy now-YES, but his PFT's are a little worse everytime we go in. And it scares me so much. I don't want to be without him. I knew coming into this relationship that someday, that would happen. But I always had visions of it being so far off. And I don't imagine it will be anytime soon either, but each time he doesn't do his meds just makes me think that he's just cutting more and more time off of his life. So I think you are right about it being about me being scared too, that does have a lot to do with it and maybe I need to talk to someone about it (professionally) because I can't have it running my life. I don't think about it, until times like this when he doesn't do his meds, but then it really gets me down.

And LisaV, thanks for your post. You also had a lot of very important things in there that really touched me. Thank you for your post.

I am very grateful for this site and the ability to turn to others here with a problem and get honest advice/recommendations and get support as well. Thanks everyone.
 
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Markus

Guest
wow I feel stabbed in the back. I hope most of you normally dont listen to only one side before making judgments about people. Calling me "Lazy", "selfish", "irresponsible", and what ever else some of you have called me shows just how much you know about me...NOTHING! There is more to the story then what is laid out but I guess you people are used to listening to half a story and judging your thoughts off of that. I know that I am going to die and my kids will also have to except that fact that dad is not going to be around for ever.

Now I also want to thank 3 people who actually had some good feed back which I thought helpful: Allisa, Emilee, and LisaV you three put some good info out there for me to read which made me think so thank you.

For the rest of you calling me different name I am glad we had an opportunity to get to know each other before you made any types of judgments about me. I wish you all well in life.
 
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Emily65Roses

New member
Mark, you make a good point. So let me quickly edit the things I've said.

You are not <i>necessarily</i> selfish or irresponsible. But you are ACTING selfish and irresponsible. Assuming Julie is not outright lying, and you are skipping all that crap, I will continue to hold that opinion of at least your actions, if not you yourself. Three kids on the way (and a wife, I might add), does not allow for thinking only of oneself. That's part of what goes into marriage and fatherhood. Doing stuff you just don't want to do, because it's for the good of the other people involved (as well as yourself, as I'm sure you're aware).
 
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kayleesgrandma

New member
Mark, if you read my post I did not call "you" anything, it's your actions that were of concern. I'm sorry, and I think you're right--it probably does feel like there was a rush to judgement of you. Because of Julie's condition we kind of circled around her. We did it out of concern for you both Mark--knowing how important it is to do your therapy so that yu'll be here longer... I'm sorry it seemed so personal, and looking back, it was. This is your own business, and we really don't have a say in how you run your life. But if you notice, there were a more than a few voices of reason in your defense. I was going to comment on LisaV when I came to yours. She said some pretty insightful things. This has helped a few of us (at least me) realize how we look at this whole cf thing. We're all learning to live with it Mark, and I think we all are running scared some of the time. We do care for you Mark--even though we don't really know you. Those of us who don't have cf don't really understand how much you must hate having to do all the stuff you have to do to maintain yourself. We should try walking in your shoes a little more. But because we don't have cf, but someone we love has, it scares us. We want you around for a long, long time. The goal is to join Fred's "Over 40 Club". But please know that Julie needed to vent also. You know how us women are Mark, we think you just hear blah, blah and tune out the rest. Are you still there...anyway sorry for stepping on your toes. By the way, what IS your side of the story? (I know, men don't like to share...)
 
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Scarlett81

New member
Again Mark-my post was very strong as well-but I didn't feel like I was assaulting your core being. I said I thought your actions showed selfishness, but more importantly I thought your actions were possibly masking deeper issues:like depression, or denial about your illness. I spoke from experience, b/c that's what I went through. And any Cf center/doctor whatever will tell you that this is so so common in this illness. Just as common as getting nasal polyps and intestinal blockages-its a side effect of cf.
All I'm saying is you are not an exception. I always thought well I'm an exception-I'm not like the other's with cf, they're really chronic, they're different. I was wrong.

Also, we all know that we're going to die someday. Sadly, Julie could die suddenly and unexpectedly. My husband could die suddenly-a perfectly healthy person. So to say, I know I'm going to die someday and everyone's going to have to accept that-that is true. But are you planning on dying, rather than planning on living? There's a big difference.

Anyway, sorry if anything I said upset you. No offense was meant. I just wanted to say I went through the same thing-your reasons may be different than what my reasons were, but it was basically the same thing when it boils down. I wish you and Julie the very best in life, good health, and lots of fun with those babies.
 
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DietRootBeer

New member
Mark,

I think what your are doing is very selfish. If I was your wife I would be FURIOUS with you. You have a responsability to be a man about your illness and take care of yourself. You have a wife and three babies who rely on you to support them financially, and emotionally. I am not judging you as a person...but your actions. Please remember that actions speak louder than words. Right now if Julie saw you doing your treatments religiously she would probably translate that to wow! He loves me and our babies so much that he will do anything and everything to keep his body and mind in good health so we can be a stong family and have one less stress to deal with. Taking care of yourself means that you can be there for your family ...you are strong enough to go to work everyday...you are strong enough to get up at night with the babies to give your wife a rest...strong enough to be the emotional rock that your wife needs desperately ( hello?? She is carrying 3 babies right now and has stress about finances, going back to work, you getting sick...etc)

If you want to show your wife that you love her unconditionally and want to be there for her in every way shape and form..do your treatments Mark. If not for yourself then for her and the babies. They love you so much. Return that love with taking care of yourself. If your were single I would just say your life man...but you married and then signed up to have children. You must put them first now...all that Julie has done to support you in the past...return the favor.
 
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littlemisssilly

Guest
Hi Julie (and Mark),
I haven't posted for a while but thought I might share some of my own thoughts and hope that they help.

Coming from the point of view from someone with CF, even though I have been very compliant with my treatments throughout my adult life, as a child, I was a nasty piece of work sometimes. My mum would always ask me if I took my enzymes and that would drive me nuts, I would lie and say 'yes', I would throw them in the rubbish etc, I would even throw my lunch out .... for years. Reflecting on that now, each time she asked, it would slap me in the face that I was 'sick', not like all the other kids and I hated that because I wasn't ready to face that, I faced that when it was time for me to face, not when someone else told me to.

Julie, I'm not comparing you to my mother by all means. My point is, I also know I have to do treatments to stay healthy etc, I understand all the physiology behind it. Sometimes however, that 15-20 mins on the nebuliser seems like the longest 20 mins ever, it's 20mins of being reminded of CF, it's 20mins that I know will be followed by coughing / huffing / more coughing etc etc and in all honesty, all the treatments, twice a day, all the enzymes, the constant coughing, the obsessing over whether you're getting 'sick' or not add up and sometimes, you just want to retreat and try and feel 'normal' I guess.

I know missing treatments is not a wise decision but sometimes, saying 'no' brings back a sense of control however false that sense may be. It reaffrims the fact that you're still an adult, capable of making decisions about your life, CF or no CF and sometimes making bad decisions is all part of that journey. Focus on the two of you, the babies and maybe try to put the CF to one side. Mark sounds like a smart man, I'm sure he'll get back on track in his own time. Good luck.
 
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Scarlett81

New member
LB-
I understand what you are saying. In some cases that's probably true.

But I feel like much more of an adult and a grownup when I'm being resposible and doing my treatments. I don't know, maybe its just me. I feel more in control then. Anyone else ever feel like that?
 
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EnergyGal

New member
I am with you on this Christian. I always felt more like an adult when I was younger because of all my therapies I chose to do. If I did not feel well, I did extra. I came up with a term for my cf buddies back in the old days called "double therapies" If I felt congested, I did two full treatments back to back. I felt in control when I did the right thing. I started to jog and once I realized that I could do that for miles, I felt invincible but years later, I could not always keep it up.
 
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NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Markus</b></i>

wow I feel stabbed in the back. I hope most of you normally dont listen to only one side before making judgments about people. Calling me "Lazy", "selfish", "irresponsible", and what ever else some of you have called me shows just how much you know about me...NOTHING! There is more to the story then what is laid out but I guess you people are used to listening to half a story and judging your thoughts off of that. I know that I am going to die and my kids will also have to except that fact that dad is not going to be around for ever.



Now I also want to thank 3 people who actually had some good feed back which I thought helpful: Allisa, Emilee, and LisaV you three put some good info out there for me to read which made me think so thank you.



For the rest of you calling me different name I am glad we had an opportunity to get to know each other before you made any types of judgments about me. I wish you all well in life.</end quote></div>

so what's the other side of the story, then?
 
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