I'll never learn

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Potsie
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Date Joined Oct 2009
Total Posts : 291
   Posted 2/22/2010 7:45 PM (GMT -7)   
Does anyone here like to get snapped at? My son is going through a flare right now and he'll get his Remicade on Thurs. But when he's like this, I do things for him, anything I can think of to make him feel better. But, where I make my mistake is asking him 'what's wrong'. Then I get snapped at. And it hurts so bad. This has happened countless times, but I never learn. Does anybody else have this problem?

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 2/22/2010 8:22 PM (GMT -7)   
Potsie,
      Being sick does not give him a license to treat you badly.  "Honey I am sorry you feel bad. This does not give you the ok to be nasty to me.  I am just trying to help.  It is ok to tell me to back off, but you need to do it in a manner that is respectful.  (i.e. "Mom I appreciate your caring, but please back off." and then you need to actually do it)  Especially if you want to be treated with respect."  Bear in mind that is very general advice and is suitable for people over the age of 10. 
 
      But there is a caveat that if things like this keep happening please speak with a therapist.  There is chronic illness therapy, and want to encourage you to think about it even if your son does not want to because it is a heavy load to be a caregiver.  Please also bear in mind that it might take you several different therapists to find one whom you feel comfortable with.  I am concerned about you. 
 
      I wanted to point you toward this thread in prostate cancer, because I want you to know you are not alone and it might help you to read it.
Hugs,
Navy
P.S.  If I could take back all the nasty, unsupportive actions behaviors that my Mom put up with I would.


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 2/22/2010 8:36:48 PM (GMT-7)


Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 2/22/2010 8:51 PM (GMT -7)   
Navy, thanks for the link. I'll check it out. I've told him how I feel when he does that. But I think he forgets that. Sometimes, it seems like he blames me for what he's going through.

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 2/22/2010 8:57 PM (GMT -7)   
Potsie at some level we are all mad at the world for something, especially when we are teenagers! How old is he again? Was it 13 or 15? (I think?)
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Potsie
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Date Joined Oct 2009
Total Posts : 291
   Posted 2/22/2010 9:09 PM (GMT -7)   
He's 23.

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 2/22/2010 9:14 PM (GMT -7)   
Ok that changes things a bit. Not about his behavior being unacceptable, but in that is a different developmental stage. What do you think about counseling?  I wonder about his mental status?  I would be angry at that age, but you having to wait on him hand and foot is very concerning to me.
Basically being bedridden makes me wonder if he needs to be in the hospital?  Is he recently post op?  Sorry I cannot remember. 

.


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 2/22/2010 9:19:43 PM (GMT-7)


Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 2/22/2010 9:17 PM (GMT -7)   
If I had a car I would consider it. He only have one car and hubby goes to work. His workplace is too far to consider taking him to work to have the car.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/22/2010 9:20 PM (GMT -7)   
What do you do for doctors appt and etc? Is public transportation an option at least for you?
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 2/22/2010 10:06 PM (GMT -7)   
When the appts are early, my hubby drops us off at the hospital that my son has his appts. Then we grab a cab to get home. If the appts are later in the day, we catch a cab and my hubby picks us up later in the day. It gets pretty expensive.

tsitodawg
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Date Joined Sep 2006
Total Posts : 845
   Posted 2/22/2010 10:55 PM (GMT -7)   
Potsie, I do not know your son but if he is like most guys at 23 years old he is probably hungering to have independance and live the life of a normal batchelor. This does not in any way justify or excuse his disrespectful snapping but it may give you a little insight where he is at. I am 30 years old now but I was about his age when I was first diagnosed. Before I got sick I was an extremely active outdoorsman, athlete, and college student. It was not odd for me to be out doing something active everyday and competing with my friends on some sort of ballfield good or bad weather. Even though I was married, I still was trying to finish my schooling and find my place in this world. Then I got sick and the whole world seemed to crash around me. My incredible wife is a couple of years younger than me but she was a caregive and continues to be my caregiver through all of the operations and hospitalizations. I used to try and keep up with my friends even after I got sick and it really started to get me down when they would be playing basketball or going hunting and I could not keep up. The steroids and medications caused me much embarassment and I did not even recognize the guy in the mirror but my wife still loved me the same.
Just like your son, there were times that I have lacked confidence or was embarassed and snapped at my wife. The best thing that she ever did for me wast to tell me that she deserved the same respect that she was showing me and I needed her. When she told me I did the typical guy thing and acted like what she was saying was not true, but deep down I knew she was right. I had not recognized the way I was talking to her sometimes( not abusive just being grumpy)and now I notice it. She does give me a little more patience when I am on prednisone but she keeps me in line. Just because a person is sick does not give them the liberty of treating others poorly. Call him out on it when he does snap at you and let him know that he is 23 and could be doing this on his own. When he understands that your love and help is a blessing, he will not only treat you better but also his future spouse and other people. I am sure that he is a great kid but even great kids go through phases too.

vixen
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Date Joined Jan 2010
Total Posts : 794
   Posted 2/23/2010 2:46 AM (GMT -7)   
There is some good advice here. I guess he is just frustrated (and/or depressed) and is taking it out on those closest to him! Maybe although he may need help from you he also wants to be treated normally too. I guess it is a very fine balance between the two!
Can he claim for diability allowance (are you in the US ?) Here in the Uk you can (there are different rates for different degrees of disability and/or mobility) which is given to make life easier-like for taking a taxi to hospital appointments, to cover your time giving medication, encoragement to eat etc. It basically provides some money for things that your son needs doing for him that another unaffected 23 year old would not need doing for them.
It may be worth looking into.

Wolfie40
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Date Joined Dec 2008
Total Posts : 947
   Posted 2/23/2010 5:19 AM (GMT -7)   
Tell him he is not to old to take over your knee and give him a spanking!!
lol! just kidding.
You don't deserve to be treated like that and he needs to know that Plain and simple!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 2/23/2010 5:21 AM (GMT -7)   
I have to admit this is something I am guilty of, like your son I am 23, my last flare was a longish one, I was malnourished, exhausted and I think sometimes this illness can just make us cranky. It was when I had people constantly in my face going "are you ok? are you ok?" it would go beyond caring and seem patronising after a while. In a normal situation that would not bother me at all but sometimes it can be very difficult to control the irrability and I'll admit I did snap at people sometimes in a "leave me to it" kind of way, I would always feel guilty immediately after though, no one likes to be nasty at the end of the day but sometimes it can be hard to not let the odd snap out. I have always been an extremely independent person and I think its just difficult for me to handle when people treat me like I can't be independent because I'm ill. Like you say he's getting his remicade soon and hopefully that will make him feel much better. If he's being irritable or moody the best thing to do is to just leave him to it, make it clear that if he needs anything he can ask for it, odds are he just needs some time out I'm sure he doesn't mean it and does appreciate you but this disease can really affect your mood so try not to take it personally hard as that may be.
 
 


Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 2/23/2010 7:49 AM (GMT -7)   
You guys have been so helpful! I really appreciate it. Wolfie, you crack me up!

I had a restless night, so I'm a little tired this morning. We have an appt today, and we'll be waiting for hours in the waiting room. We go to Parkland hospital in Dallas. It's a public hospital and a great one. It's also the hospital that they took John Kennedy and Bob Kennedy to back in the 60s. My son gets help from the Parkland Assistance program. They pay for everything, except small co-pays. He was in the hospital last year for a month, and the bill was $159,000, and we didn't pay a penny.

Once again, you guys are awesome! Thanks for making me feel better! I'll try to be a little less sensitive.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/23/2010 8:42 AM (GMT -7)   
Potsie,
I am evidently not being clear this is not your problem with being sensitive (I just suggested therapy for you as well as him simply because this has got to be incredibly stressful for you and I want to help you anyway I can).   It is his piss poor behavior is the problem and you need to talk with his doctor about how he is with you. While there is generally a retrograding in illness, but his behavior is out of line and needs some checking into. I strongly encourage you having him think about getting an evaluation. His level of functioning is not ok and getting the remi moved up so it does not have time to wear off.
My second concern is why is he so bad that you have to wait on him hand and foot? That makes me wonder if there is not something else going on? Like lupus like drug reaction or some malnutrition issues? (ANA, thyriod, vitamin defiencies, etc.)
Please take care of yourself too!
Navy


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 2/23/2010 8:51:50 AM (GMT-7)


Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 2/23/2010 8:55 AM (GMT -7)   
Navy, he has already been moved from every 8 weeks to every 6 weeks. The reason I wait on him hand and foot is because he has 0 energy, especially the week before Remicade. I really don't have a chance to talk to his doctor because he's there with me and I really don't want to make waves.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/23/2010 9:07 AM (GMT -7)   
Potsie, I understand not wanted to make waves, but I wonder if he is normally not like this, there might be something else going on? Like the lupus or some sort of infection, or cognitive decline due to illness? If he has no energy I would wonder about his b-12 level especially (injection are usually the best for crohnies because the area that normally would absorb it is commonly attacked by this disease). The lupus can make it incredibly painful to move (and is very hard to discribe).
Please understand I do not mean to push, but I am concerned that this snapping is a symptom of something else going on.
Plus it might be time to go down to every 4 weeks or switch meds. 


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 2/23/2010 9:12:42 AM (GMT-7)


Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 2/23/2010 9:40 AM (GMT -7)   
I think it's too soon to go to 4 weeks. They just moved him, so I don't think they'll move him again so soon. The gastro doctor will see him at his worst today, so I'm hoping she'll come up with something. I'll look into this Lupus too. I am going to ask the doctor about Vitamin D though. My son is usually not like this when he's feeling good. I know it's just because he feels rotten. I appreciate your advice.

Mary

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 2/23/2010 9:57 AM (GMT -7)   
Vit D and B are very common issues with crohns. I am on 50,000 of D (once to twice a week depending on blood work) and injectable b-12.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 2/23/2010 10:03 AM (GMT -7)   
I think those would help my son.

Lizard99
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Date Joined Apr 2006
Total Posts : 192
   Posted 2/23/2010 10:50 AM (GMT -7)   
I'm embarrassed to say that I get like this too and I'm 28 years old. I definately agree with the above post that it's all lack of some type of vitamin or nutrient. B vitamins definately make me feel better, I haven't felt any different with vitamin d yet, but I just started that. When I'm really sick I get so depressed, then when I get nutrients into my blood I feel like a different person and can't understand what happened. I know I'm in the wrong when I snap, but at the same time the depression gets so severe that theres no seeing past it, not that that is any excuse at all! I know its shameful!! He doesn't mean it, I know that for sure. He just is struggling and frustrated and its a life long battle to face and can be so overwhelming at times. Also, unless someone walks in our shoes they will never know what it's like and that's frustrating too, to make others understand. So I'd say get more nutrients into him. I drink vegetable juices that I make myself at home (I know not everyone can tolerate), or try ensure, anything liquidy so that his blood can absorb the nutrients fast without having to work for them:)

MAG102886
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Date Joined Jul 2008
Total Posts : 674
   Posted 2/23/2010 6:16 PM (GMT -7)   
I also hate to admit this but when I am sick and flaring I just WISH my parents/people would leave me alone!!  My mother has learned this, she knows if I need/want something I will let her know. When I'm flaring I'm angry at the world, I don't mean to take it out on anyone, but when people come around they are the easy target. I prefer to be alone when I am sick (maybe thats unhealthy emotionally?) but it works just fine for me. I don't like for people to see me sick, or give me sympathy.  I'm just the same as everyone else only my butt is broke, right? I'm the same age as your son, we might think alike.
 
 
My only suggestion is to make it very clear  that you are there and ready to help if he needs or wants it then leave it alone. I can honestly say that all of the times my mother "nagged" (thats what we call it in my house) it just pushed me away from her and not want to tell her what was going on and how I was feeling especially when I was sick.  It came down to every time she would ask me how I felt my default answers were "fine" or "ok", regardless of how I felt because I wanted to avoid a conversation.  I'm sure when I'm a mother I'm going to want to know every little detail about my child and how they are feeling (especially when they are sick) I just know from experience that it can push children away. Don't take it personally.
Dianogsed with Crohns: At 16 years old. 23 years old now.
Surgeries:3 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings, Fistula Repair
Current Meds: Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: None.
 

Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 2/23/2010 8:04 PM (GMT -7)   
Mag, I've got one question for you? If your Mom was sick and you want to do everything to help her and you want to know more about how she feels, would you feel the same? I see your side, but I also see hers.

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 2/23/2010 8:59 PM (GMT -7)   
Of course I would want to help her and know how she is feeling, but if she told me that she would let me know when/if she needed something, then I would respect that. I would make it clear that I am there to help when she wants it.  
Dianogsed with Crohns: At 16 years old. 23 years old now.
Surgeries:3 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings, Fistula Repair
Current Meds: Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: None.
 

Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 2/23/2010 9:26 PM (GMT -7)   
Thanks Mag. I guess this is still new to us. We'll have to find our way to understanding each other.

While we were in the doctors office, we had a long talk. The best talk we've had in a long time. He did apologize for snapping at me.
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