I need some help/advice- LONG POST!

[wallflower]

I don't think we need to know the rest of the story. I'll admit I didn't read all the posts, so forgive me if I am repeating anything already said.

Julie, I know it can be really frustrating to be involved with someone with an illness. While I know you worry about him and are trying to be helpful, I think about the worst thing you could ever do to your partner is lay such a terrible guilt trip on them. He already knows the consequences of his actions and missed treatments. He already knows he may be leaving his kids without a dad. He already knows you are paying his college money. To throw this in his face as "blackmail" or a "reality check" is not productive and makes Mark the "bad" man in the house. I can tell you words like that can be remembered for a long time, and really hurt.

I also think its wrong that you see this as his problem (where you just give up and leave him alone to get sick so you can say I told you so).

You both need to be in this together (regardless of the babies) and figure out something together as a family that you can both participate in and will work. I know thats easier said than done, but I don't think its impossible.

It sounds like something has really changed for him since the last move - have you both talked about all the new changes and how you like/dislike them? Julie, are you going with Mark to the doctors?

Doing treatments (especially long ones) really does suck. Is there a way you can make them enjoyable for both of you? If you approach them a team, perhaps it would go better. Without nagging, or directly saying "Time to do your meds" you could ask him is this is a good time to fit one in, and help him put the cups together - it could be a time when the both of you spend time with each other watching a movie or giving each other foot massages - or after it's done you both walk down to DQ for "babies" treats as a reward.

It's hard to give advice to a stranger, and I'm not attacking or suggesting that you aren't already doing some of these things - just ideas. I do know that if you both think your busy and having a hard time now, just wait until the babies are here. You guys need to have a gameplan in place before the babies so you both know your expectations so you aren't adding undue stress and worry to an already busy and hectic lifestyle change.

I wish you guys the best, and if all else fails, marraige counselors do help.

 

[Markus]

I dont think it matters what the other side of the story is, I understand that Julie was just venting since she considers so many of you friends here, I was just shocked that people would call me lazy, selfish, childish, and what every else some of you have called me. I guess for those people who did call me those things you would probably walk up to someone with cancer and tell them they were being lazy if they refused Chemotherapy, every buddy has the right to their own opinion. I have to find my own path in life and doing something just because someone said to is being unreal to myself. My children will always come first in my life the same goes for my wife, but if I were to listen to everyone that has told me what to do because they "love" me I would not be in good health like I am now. My doc's have always said you eat to much protein and your kidneys are going to be hurt, you lift to much weight, what happens if you have a lung collapse, lots of stuff like that, (this is all that comes to mind right now) all of these people care about me yet I am staying true to myself, Julie knew this about me when we got together. the Comment about death was just in response to someone elses thread, I live each day to the fullest and I feel that I have a great life, you never know when your time is up so you should enjoy each day like its your last.

Thanks to some of you that put some good information, it seems that after I posted last night some of you put down some information that is actually useful so I appreciate that, I really do, Barb your post seemed to be very helpful and I hope Julie does read it which I am sure she will. On the other hand DietRootbeer, you say you were commenting on my actions but you also say "If I was your wife I would be furious with you", seems kind of personal to me, dont worry I have never been much of a diet rootbeer person anyways LOL. I just hope that you dont do things just because someone loves you be true to yourself good luck in life.

yall have a good day!

 

[julie]

Thank you to everyone for the continued posts. It's helpful to me and that's the only reason why I came here to post. Many share the same line of thinking that I do. I feel he should be doing his treatmetns for a number of reasons, and I can only hope that I am one of them and that our children will be one of them as well.

And Mark is the type of person who has never really followed the advice of any medical person-to an extent. He's right about when his doctors say he's taking too many supplements, he's eating too much protein, too many calories, lifting too much weight... and I wholeheartedly pat him on the back for continuing to do what works for him in those situation. He keeps eating the way he does, he keeps lifting the weights, he keeps taking the supplements and it works for him.

But when things aren't working for him, like not doing his meds and then having his PFT's fall, I feel I HAVE to say something to him. IF he were doing his meds and chest PT and the PFT's were still falling... ok, he's doing what he can to maintain and I can't complain. But when he doens't do them, and we are seeing these changes in his lungs and PFT's, it makes me upset.

I'm just kind of talking this all out now, not trying to argue with anyone/anything or justify anything.

And Mark and I are two differen personality types too, so when I think "well, in this situaiton I'd do this" he does it the completely opposite way. Not for any reason other than it's just how he is. We think very differently. And often times, this is a good thing for us, when we are willing, we can help eachother out with, "well I see it this way" and come to a middle ground. This is one where we never come to a middle ground.

Barb, you make some very good points and I am happy to see all sorts of posts of various opinions. It helps me to stop and think about someting I would not have considered of my own accord. and to answer your questions, yes I always go with him to the doctors. I know how much he hates to go and I would never have him go alone. And when I was more useful aroudn the house and helping him out (I've faced it, I'm pretty useless right now... spending 75% of the day on the couch with my feet up because of the contractions and to get pressure off my cervix so I dont' go into preterm labor) I would say, "ok, I can make dinner so you can do your treatment, what time do you want dinner (or if he just ate) how much longer until you'll be ready to do your treatment?" And I use to bring his neb cups and meds out to him and bring the nebulizer over to where he was sitting.. again, things I simply dont have the energy to do right now, but will again after the babies are outta me!!! I think your suggestion of a foot massage or something like that is a good idea. I'll see what he thinks of it. Heck, I can do one of those laying down. Maybe also a board game or someting for a change of venue when he does the meds. Get out a game he likes and play it instead of turning on the TV, because we are watching a lot of TV lately. Thanks for the suggestions and your opinion.

Thanks to everyone for the info, ideas, suggestions and sharing where you come from with your opinions. I posted this here because I KNEW that people would share with me and right now I'm only seeing my opinion, so I defiantely needed to hear what all the different opinions are. Thank you for taking the time to do so.

In case anyones wondering... Yes, mark and I did talk about this yesterday and he says he works better on schedules so he's going to try and figure out when it woudl be best for him. The thing that's hard about the chest PT (for him) is that the guy eats around the clock!!!!! And I can't imagine doing chest PT on a full stomach (hello vomit). So that's difficult for him to figure out. HE thinks when he gets back from the gym would be the best, but ordinairly he makes himself a huge lunch when he gets back from the gym (he's a cooker!!!! and good too) and can't wait too long because he's hungry. If I wasn't so pregnant and having all the contractions I am, I would make his lunch while he does his treatments and then he's done and lunch is ready.... but I just can't do that right now. So he'll figure someting out.

 

[Scarlett81]

<In case anyones wondering... Yes, mark and I did talk about this yesterday and he says he works better on schedules so he's going to try and figure out when it woudl be best for him. The thing that's hard about the chest PT (for him) is that the guy eats around the clock!!!!! And I can't imagine doing chest PT on a full stomach (hello vomit).> -


Just a tip for that-I love breakfast too. But doing a treatment after it sucks, sometimes I cough so hard I even throw up my food. So, I fight the urge to eat first thing, and I do my therapy first. The coughing builds up my appetite even more and I afterwards i have a huge breakfast. I consider a big breakfast my reward!

Just a thought.

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Markus</b></i>
I guess for those people who did call me those things you would probably walk up to someone with cancer and tell them they were being lazy if they refused Chemotherapy</end quote></div>

Just thought I'd make sure that I never said anything of the sort. I'm one of the ones who advocates for making your own decision on a tx. Same sort of idea. It's a personal thing. And I don't call down on anyone who chooses not to opt for one. But skipping meds (key word there is meds, not life-altering incredibly invasive operations, or cures that are arguably worse than the disease [i.e. chemo]) that will keep you alive much longer (especially when you're still in decent enough shape to take them and have it make a difference) doesn't make sense. I didn't say listen to everything your doctor tells you and tattoo it on your @ss, because it's immediately gospel. Hell no. But if you do Tobi or your vest or whatever else like once a week, then you're acting, as I said, lazy, selfish, etc etc, whatever.

I question things my doctors tell me, I refuse certain meds. But I cooperate and do the meds I have agreed to do. I won't do inhaled Tobi. But I have agreed to do Pulmo and Colistin. I'm doing saline, and was prescribed the 7% mixture, and I'm still doing saline, but at the agreement that 3% was okay, because 7% was too abrasive. It's okay to refuse some meds, some treatments, as long as you don't refuse them ALL. If you refuse them all and you're by yourself, then do what you want. If you refuse them all and you're a husband and a father... well, you know what I think about that because I've already said it. You don't have to take everything they tell you to. I don't either. But you do have to do something.

 

[miesl]

Ideas for things to do together as a couple while vesting/nebbing...

a) Find a TV series you both enjoy watching. Right now Jeremy and I have been watching Babylon 5 on DVD. An hour long tv show goes about 40 minutes or so - enough time for a half hour vest and coughing. We also throw on the subtitles so we don't have to blast the volume super loud.

b) Board games. There are some good two player games that take an decent period of time.

 

[EnergyGal]

I thought when a cf patient inhales TOBI nobody should be around them? That is what I was told but not sure if this is true.

 

[Scarlett81]

Risa,

I have heard that too. However, the doc that most recently told me that said it is basically just a theory. Based on if that person needed TOBI in the future they be immune to it. But, you'd have to sit together every therapy, every day for years probably.
Not to mention, why would they ever give a non-cfer TOBI? Unlikely.

 

[LisaV]

The other reason not to be around someone using TOBI is to avoid the side effects like deafness etc. Which might not seem like a big concern to a non-pregnant person, but ...
anyway, julie, just to be on the safe side, I'd check out with your doc if you should be in the same room as Mark when he's doing his tobi.

 

[EnergyGal]

When I was in the hospital for my transplant the therapist would leave the room imediately after giving me tobi and would tell any of the people in my room to leave as well. so if I do Tobi at home, I tell my husband not to come near me. Thanks for responding.

 

[Scarlett81]

wow, well I've never experienced that, so maybe I'm wrong. But I definately get the whole deaf thing. good point.

 

[julie]

I never heard about/knew that. I'll definately be asking the doctor about that one.... good to know.

Thankfully, (or not thankfull, not really sure at this point <img src="i/expressions/face-icon-small-smile.gif" border="0">) Mark hasn't done TOBI since I've been pregnant but I will definately be asking for myself and the pediatrician for the babies sake too once they get here.

I love this site!!!!

 

[Giggles]

I really feel for you! Although it is hard for me to imagine since I am the CF'er and my hubby is the not. But, I think you can not force someone to take care of themselves, it has to be up to them. I know that probably does not help you much and I am soooo sorry. But, your post made me think about my dad who smokes and my mom or I can NOT get him to stop no matter what we say or do. And with my dad it has to be up to him. My dad has to make the decision to stop. So, I think that is like what Mark has to do. He has to decide if he wants to take care of himself or not and unfortunately I think it does not matter what you say or do it has to come from him. Maybe once those cute little babies pop out he will see he must keep himself strong if not for his sake but his children. I do wish he would think that way now but you can not make someone do or think a certain way.

I do hope he starts doing his treatments and meds because it will only help him in the future to have a strong baseline for when complications arise in the future.

I know I feel better when I do my meds and therapies and if I don't I pay for it and I am not willing to feel that way PLUS if I can keep myself as healthy as possible then when I do get sick and do my tune ups yearly then I can bounce somewhat back and resume normal activities.

Julie hang in there and I am sure it will all work out and he will see the light!!!


Jennifer 34 years old with CF and CFRD

 

[goingup]

it sounds like mark needs to GROW UP, especially him asking
YOU   to REMIND  him to do all his stuff
because he forgets.... when the babies re born, is he gonna forget
to change their diapers, or will he need to be reminded........
grow up mark, julie is not your mother and julie you are adding
fuel to the fire by reminding him all the time, of couse you care
about him but as long as you are always treating him like a baby
and reminding him, he doesn't have to worry about a thing.... My
advice, don't remind him about anything for a couple weeks and when
hestarts to not feel good, you can throw it in his face.... It's
kind of like the baby who falls, the baby falls then looks around
the room to see who is gonna coddle her, but if the baby is not
seeing anybody reacting to her falling and just ignores it then
more than likely she wont cry!!!!!<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[sweetdeal]

Julie, I want to thank you. I'm in the opposite situation as you. I
have CF and my husband is constantly telling me to do my meds and
therapy. It normally annoys me and I say "yeah, yeah,
later". I would put it off until it was too late at night and
I knew I could get away with not doing it.<br>
<br>
You have opened my eyes. My husband doesn't want to lose me and his
way of taking care of me is to ensure I take care of myself. I
always knew this, but your post allowed me to see how he feels.<br>
<br>
When I would avoid doing my treatments it had nothing to do
with my husband. I guess I just wanted to be "normal".
But I guess we have to realize that we have a disease and we also
have a way to fight it.<br>
<br>
Again, thank you. I hope, like me, this will help Mark to
understand how you feel.

 

[Markus]

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

it sounds like mark needs to GROW UP, especially him asking
YOU   to REMIND  him to do all his stuff
because he forgets.... when the babies re born, is he gonna forget
to change their diapers, or will he need to be reminded........
grow up mark, julie is not your mother and julie you are adding
fuel to the fire by reminding him all the time, of couse you care
about him but as long as you are always treating him like a baby
and reminding him, he doesn't have to worry about a thing.... My
advice, don't remind him about anything for a couple weeks and when
hestarts to not feel good, you can throw it in his face.... It's
kind of like the baby who falls, the baby falls then looks around
the room to see who is gonna coddle her, but if the baby is not
seeing anybody reacting to her falling and just ignores it then
more than likely she wont cry!!!!!<img src="i/expressions/face-icon-small-happy.gif" border="0"></end quote></div>


It sounds like you are looking for a fight, it is clear that you do not know me yet you feel the need to tell me to "grow up" I am very quite for the most part I never complain about anything when it comes to my CF and I never will so your theory is wrong when it comes to me. Maybe that has worked for you I dont know. I can tell just how grown up you are since your advice is to throw stuff in peoples face. I hope that works out for ya and we dont meet.

Cheers

 

[NoExcuses]

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

I dont think it matters what the other side of the story is, \</end quote></div>

But you just lectured us about how we don't even know your side of the story.....

If you're so upset about it, why don't you tell us your side of the story?

 

[thelizardqueen]

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

My advice, don't remind him about anything for a couple weeks and when he starts to not feel good, you can throw it in his face....</end quote></div>

I think that's the wrong approach completly. Throw it in his face when he becomes sick? What kind of loving partner would that make you? For better or for worse, Julie is by Mark's side, and vice versa. To tell Julie to throw it in his face when he gets sick is simply childish, and not a grown up thing to do at all.

 

[JazzysMom]

I have had my share of lectures about how my not taking care of myself isnt fair to my husband or daughter. LIKE I DONT KNOW THAT! Sometimes you just need (right or wrong) to feel in control & normal. I know its frustrating & scary for Julie as it is for my husband. I am better, but even with a few scares it wasnt until last year that I got my act together. I dont believe its right that everyone be so hard of him. Its tough for both & as Julie said this has been going on for a few years or at least part of it. I dont really have any answers because I did what I wanted with & without the guilt trips & lectures. When I was ready I was ready. Sadly I dont know what else to tell you. What worries me is if he does feel he doesnt have time now what the devil will happen when there are 3 babies to care for! It will only get harder!

 

[65rosessamurai]

Hi Julie!
I'm sorry that after only reading halfway through the post, I ask this question, but since I never saw it answered in the first half, I have to ask.
Throughout all the lecturing, scoldings, etc. to Mark, did you add the phrase "I love you Mark, but....(you have to take care of yourself for our sake)"?
Reason why I ask is because my ex would go through the same routine with me about studying my Japanese. Of course because she never cared about my health, I never heard her complain about it, but I was suffering by year ten!
She would lecture on and on, things similar to what you are doing, like often remind me, yet there never was the word 'I love you' coming from her.
With Yuka, she doesn't say it, but I can tell often by her body language she really cares, and that alone seemed to motivate me to take the daily vitamins she spent hours on searching the internet for, so I (we) can stay healthy.
When I went to visit my sister, two interesting phrases came from her, "Having a 'come to Jesus' talk" was one. Our parents, as we become adults, are found to be not as perfect as we perceived, and that required some serious discusions of 'enlightenment' for them. The other phrase, or word, was "hard love", which was a strict but loving way to express how important it is to do something for their own good.
I also would have to make a special point on how Mark goes about without enzymes. I have been very fortunate not to have to take enzymes, and still have healthy bowel movements, most of the time these days. (embarrasing, but necessary to state!) BUT, there are some times in which I wish I had the proper enzymes for certain foods because of what the results are afterward. Also, throughout my eleven years of my first marriage, I was not given enzymes, and really had started on an incline of malnutrition! (the ex-wife was denying me food, too!)
As mentioned, I don't know what Mark's gastrointestinal involvement is, but if say, he takes in 10,000kcal (just as an example) of food daily, but without enzymes he only absorbes about 4,000kcal, he has to take in more food to make up his daily amount. Say, with enzymes, he still takes in his daily amount of 10,000kcal, but the body absorbs 7,000kcal, then he only has to take in 3,000kcal extra in order to make up for his daily amount. The conclusion to this is two time, one is in reference to the importance of how the body properly would absorb the food intake, and the second would be at an economical standpoint, you would be able to cut down your food bill because he is absorbing a reasonable amount by taking his enzymes. (DISCLAIMER- this would have to be something discussed with a doctor in regards to enzyme importance for the individual)
So, as a conclusion, if you are truly expressing your love and care for him as a wife (Yes, my ex used the same phrase, too--without the 'love and care' words attached), and if he also can express the same feelings for you, perhaps he can understand the importance of taking care of himself. Maybe if you started crying hysterically, and whatever else you can think of that would suggest him to take a "reality breath", he may subconsciously understand the importance of his role, and find himself a new goal to work for.
Being a guy, and one with "mild" CF, I can relate to his 'resistance to conform', but also as a guy who had to have a dislocated shoulder to shed reality on my life, I hope his method of tragedy is not as life-long. BTW, my dad had his own "reality breath", when his heart stopped for five minutes the time he had his heart attack about ten years ago (He still has to use a pace-maker with a built-in defib-to kick his heart in the a** every so often). It's amazing what things will put peoples lives into perspective, but like leading a horse to water, you can't make him drink, he has to be thirsty enough to drink on his own. (So my suggestion to cry, etc., might make him 'thirsty'!)
Good luck and keep us posted (even if it's by PM!)
Godspeed,
Fred