Not so great of family support

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MMMNAVY
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Date Joined Jul 2006
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   Posted 11/8/2008 3:31 PM (GMT -7)   
Just need to vent for a moment...I asked my little (22 year old) brother to come with me to the follow up appointment with my GI (who has already made an appointment with the surgeon for me).  He said well if you are not going to be under the influence of drugs, why do I need to go? I told him that I would really appreciate him coming with me.  I would like to have someone else go with me, because I would like to have someone else informed on how bad the situation is.  Part of it is that I still feel pretty sick, but I am getting better.  Sometimes I feel like I am being selfish, part of it is I am already missing my Mom's level of care (she has ovarian cancer), but I do not know how to express to my family (who thinks this is not very serious) what is going on... 


Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 11/8/2008 3:35:47 PM (GMT-7)


conorconan1
Regular Member


Date Joined Oct 2008
Total Posts : 245
   Posted 11/8/2008 4:00 PM (GMT -7)   

Hi MMMNAVY,

 

I am really sorry to hear about your mom. I really hope that she gets much better, very much sooner than later.

Aren't little brothers just little pains? I have one and when I ask him to do the simple we things when I am ill, it is like, what do you think I am, your nurse? LOL... Little git. I am sorry that you are getting it so hard at the minute, but you seem like such a strong willed person. From what I see, alot of people do not understand Chrons or UC. It is like it has been hidden from the world. But yet, everyone knows of IBS!

Where I you, I would sit down with the family and discuss the details of your illness, and even have them search the internet to see for themselves just how nasty this DD is. I hope that that you get some better understanding and support from them in the very near future.

 

God Bless.

Conor


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 11/8/2008 4:07 PM (GMT -7)   
Thanks Conor, unfortunately my family has read and thinks that it should get better with medication, in fact my oldest brother used that darn football player commericial on me.   My mother is in pallative care for cancer (meaning she is DYING) so it is not going to get better and I know my sitation is not as dire right now as hers. Part of me is mad at myself for not having a good support system for myself.  I hate how this disease has taken away friends and relationships.
As much as I am peeved at my little bro, he is still better then my other two brothers about being supportive.


Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 11/8/2008 4:11:31 PM (GMT-7)


AlwaysRosie
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Date Joined Jan 2005
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   Posted 11/8/2008 4:09 PM (GMT -7)   
(((((((( Navy )))))))))

*sighhhhhh* His age . . . is like . . . he could act like 2 years old or he could act mature . . . depending on the time of day.

When I want my boys (men) to understand something, I send them an email. I carefully explain things and then tell them to ask questions if they'd like. Meanwhile, they can read it five times, if they needs to. They have the proper spelling, so if they did want to look it up, they can. Plus . . . with guys, you need to be really obvious. They don't read between the lines. So putting on your "game face" hasn't helped them understand how bad off you've been. So be brutally honest with him. He'll probably appreciate it later.

I'm sorry you are in such a lonely spot. I hope your mom is able to recover completely. Sounds like that would be enough stress to cause trouble right there.

Feeling for you!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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conorconan1
Regular Member


Date Joined Oct 2008
Total Posts : 245
   Posted 11/8/2008 4:12 PM (GMT -7)   
I am really sorry to hear that MMMNAVY, that can only add to your stress levels, which of course can upset the DD. It is not always easy to build up a support network when people think that all you need is a med. Frankly, half the meds in use today are not worth a penny, and I guess that it would take people to be suffering this DD to understand what really goes on with it. I understand what you are saying about your mother situation, however, you still need to care for yourself. As you say, your mother is your main supporter, and she would be wanting you to look after yourself with this DD.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/8/2008 4:17 PM (GMT -7)   
Oh, Navy, I'm sorry. I agree with what the others have said, but I think, too, that in some families where there is a person with cancer and Crohn's, cancer "'trumps" Crohn's every time. In other words, they may "see" your mother's suffering, but not yours.

I'm so sorry that your mother is in palliative care. I didn't realise that things had got that bad. I'm so, so sorry, Navy.

Please don't blame yourself for your lack of support. This is one of the hard things about Crohn's - it strikes young, when friendships and social connections are still fluid. The friends we made before our illness tend to move on and leave us behind, and we have very limited opportunities to make new ones. It's not your fault, Navy. It's something a lot of us struggle with.

I really am sorry. *hug* I know it's not the same as having "real life" support, but we are here and listening.

Ivy.
Co-Moderator Crohn's Forum.


FitzyK23
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Date Joined May 2005
Total Posts : 4219
   Posted 11/8/2008 4:42 PM (GMT -7)   
I'd go to your appointment with you Navy - when you get there picture the room filled w/ us!
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 11/8/2008 5:19 PM (GMT -7)   
I'm with Fitzy. Just picture the room filled with all of us crohnie friends. I've been there recently and I do understand. ((((((HUGS)))))
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/8/2008 5:21 PM (GMT -7)   
Hi Navy Have you another relative that could go with you ? Perhaps you could ask him again telling him that you are stressed out and that this is a hard appointment for you. He probably figured you weren't dopped so you be fine sometimes a person forgets the worries and concerns we have. Gosh by now I'd thought you'd be getting stronger but there's still alot that is wrong inside tell him that.

I know what you are saying about being alone at times to handle stress .Yhe car is acting up and my teen is a 20 minute drive away and I'am supposed to pick her up and the Dad gives a speech. Darn little help in that but I was so mad at least I did the dishes that were sitting. Anyway try again and don't give up. Your not alone I was thinking of you today. Keep the loneliness at bay and talk to us when you need to ,you have been here with us.

We really need more support from the CCF .Too many times we have been alone and no one to understand the lonliness of just trying to cope.,going to Dr's and all the other stuff.There should be local help available to get us threw some of these hard times. Other then Bro problems how have you been doing? Are you able to eat much? lots of love gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Julie1014
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Date Joined Oct 2005
Total Posts : 1245
   Posted 11/8/2008 5:31 PM (GMT -7)   
(((MMMNAVY))) Sending big hugs and prayers your way during this difficult time. Blessings, Julie
Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax as needed, Prevacid 30mg, Vit B12, Slow-FE (Iron), Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


randynoguts
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Date Joined Jan 2003
Total Posts : 6050
   Posted 11/8/2008 8:47 PM (GMT -7)   
hey id go to if i was there..
randynoguts 



     http://www.geocities.com/randynogutsweb/


jill in ca
New Member


Date Joined Oct 2008
Total Posts : 19
   Posted 11/8/2008 11:03 PM (GMT -7)   

mad  Oh, that is so hard.  I too am struggling with the support of my husband and the severity of the disease.  He cant seem to get his head around this is a disease you manage, not cure.  He keeps telling me to try other doctors ( I have gone through about 4 in 5 yrs.  I think you have to lean on those you understand, instead of educating the ones who don't. 

Take care of yourself!


Diagnosed with CD in 2004.  Currently taking Pentasa, Entocort, probiotics, fish oil, ultra inflamx powder.  Dairy and wheat free diet.  Only struggling now with fevers, everyday!  No surgeries yet.  Tried Mp6-gave me joint pain/tried remicade-gave me pneumonia


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 11/9/2008 1:41 AM (GMT -7)   
Hi NNavy, sorry to hear about your mom. My prayers are with you and your mom.

teddybear
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/9/2008 11:04 AM (GMT -7)   
Navy It's not easy winging it on your own hope he has changed his mind. Is your Mom still at home? I'd send my little poodle down to help you but I'am afraid I am just loving him too much to share and it doesn't take the place of a good chat or just someone to make a meal or coffee. Today I made lasagna,garlic bread and going to poop a apple pie in the oven soon. There are just so many comforts of having a Mom . I been on my own for years and have my teen and I did get her home today.

Wish I could just give you a big cuddle that you deserve. Seeing others struggle sometimes helps me remember to give my teen a cuddle sometimes.Thanks for reminding me.. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/9/2008 11:20 AM (GMT -7)   
Navy I am so sorry to hear about you and your Mom. I pray for God's comfort for you both. I think right now you are so sick and your Mom is so sick, that maybe your family is feeling torn right now. I agree with Fitzy & Zanne, please know that all of us are with you in spirit. Wish we could all be with you and hold your hand during this difficult time in your life. Please know that I am praying hard for you and your family.

Hugs,
Gail *Nanners*
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 11/9/2008 12:31 PM (GMT -7)   
Thanks everyone. She is still at home, but we have a hospice nurse for her.
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Naboo57
Regular Member


Date Joined Oct 2008
Total Posts : 23
   Posted 11/9/2008 3:04 PM (GMT -7)   
So sorry to read of your struggles.  I like either my husband or my mom with me on my big appointments always.  They are usually sometimes more helpful for the dr than i am when im feeling so crummy.  My grandmother is currently going through colon cancer, and her and i can relate to the pains of the gut.  Shes got the colostomy, and im about the only person she talks to about it, even over her 3 kids.  Im 31 and the oldest of 5, none of my siblings feel that Crohns is a big deal, they just think that meds will fix it.  I try to tell them to watch themselves and take care of their gut, and they just dont get it.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/9/2008 4:44 PM (GMT -7)   
Navy, is there anything about this coming GI appointment that is worrying you especially? How are you feeling about the approaching surgery? Would it help to talk about it, here?

I do know what you mean about wishing that someone else in the family could know and appreciate how bad things are.

I.
Co-Moderator Crohn's Forum.


Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 11/9/2008 7:13 PM (GMT -7)   
(((Navy))),
 
    I am keeping you in my prayers and close to my heart. I am sad you are feeling so alone right now. Thank God your Mother is able to be at home right now. When my time comes, I pray it will be the same for me.
 
   I can relate somewhat to what you are saying.This year, when I became ill (in bed for 3 days) after my husband had a very serious hospital stay (7 days on ICU, 3 of them on a vent) for pneumonia, (he is chronically ill also), he had the nerve to ask me what are we going to do if he gets better and I get sick. Guess he totally missed the two years I spent praying to die, prior to my DX. He drove me for my scope,was told by the G/I Doc, before they came together to wake me and tell me that I had Crohns. Then three years later asked me "Do you really have Crohn's" after hearing the illness described on T.V. He has been disabled for sometime, I have been the major bread winner for the last 25 years, and continue to work full time in an effort to keep health insurance on us both. He came home from this years hospital stay better off than he has been in years. They took him off all diabetes drugs, including inject-ables. Is he really that afraid he will have to stop barking orders while flipping the channels with the remote, long enough to bring me a sandwich? LOL.
 
 My youngest daughter (25yrs.old) , who is the most like me in her way of thinking, and very smart, read the spoon theory story this past summer. If you have never read it please goggle spoon theory and read it.  Her joints pop and crack already, and her stomach often grumbles loud enough to be heard all over the room. She realizes that all 3 of her Sib's suffer 2-3 autoimmune symptoms already. After she read the story, I told her that one so young as the girl who wrote that story, was very lucky to have a friend who stuck by her for so long, and they were both insightful young women. She asked my to explain, and I offered a few explanations, and used one of her sisters reactions to my DX as an example . After I told her that some Crohn's patients were even abandoned by their family, she asked me why I thought so many of our support network disappear from our lives. I told her it is terrible enough to fear a disease that can make you be crazy, ill, and possible cause you bleed and pooh yourself into a hospital stay, surgery, or worse... But, I said "the only thing I can think of more horrible than that would be to have to watch someone you love go through all of that". For her that point hit close to home, because a few years ago her then 6 mo.old Niece (my Granddaughter) had emergency G/I surgery .  I think the denial we tend to suffer from with this illness, extends to our loved ones, who don't have to live with our uncooperative bodies everyday, and it is not so "in their face", so they get kinda flaky. When we have a real good day, just like us they choose to think everything is fine. "But you don't look sick"
 
   So... next time they seem so insensitive, I will say a prayer of forgiveness, not just for them, but mostly for myself, because ,(especially if I'm in pain) I will need forgiveness for my anger and hurt,  I am sure they love me and are doing their best to cope, just as I am, even when they are not by my side. Oh, and them being my husband and children, I have to eat some of the blame for their sometimes self centered thinking, but after my husbands "what are we going to do" whine I don't let any of them get away with it any longer.
 
    Please ask your brother to reconsider. IMHO (I'm no expert but know all to well about grieving), you should tell him again that you need him there, and give him a chance to get past, "But big sis is supposed to take care of me". It is probably hard when he is dealing with "I have to care for and/or let go of the person who took care of me", a normal part of grief for adult children, not just young children. He may need the chance to get over himself, so he has no regrets. Sometimes we miss so much when we are grieving, and in retrospect, wish we had pulled closer to our families. 

   One more time Thank You! for always being here for us all, even when you are under such stress yourself ((((( wink )))))


              Never go faster than your guardian angel can fly!                  
     Be Patient And Tough, Someday This Pain Will Be Useful To You 
 
 Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
                                                Margie11

Post Edited (Margie11) : 11/9/2008 7:23:08 PM (GMT-7)


78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 11/9/2008 8:52 PM (GMT -7)   
 
gachrons said...
Today I made lasagna,garlic bread and going to poop a apple pie in the oven soon. 
lol gail

I thought the above quote would be good for a laugh! tongue
 
I'm sorry your family isn't very supportive.  I am lucky that my Hubby is as supportive as he is.  He has attended numerous appointments with me and shed tears with me and Dr, too.  My GI specialist commented she wished more ofher patients had spouses like him.
My Mother, OTOH, seemed to be in denial for several years.  It seems my surgery finally brought her to reality.  Before that, it was always 'you're eating wrong', 'try this treatment/supplement, it worked for so-and-so' or 'you need to see a different doctor'.  I know she only wanted to help, but she wasn't helping.
 
Keeping you in my thoughts...
Heidi
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
Crohn's and UC are pretty darn crappy, but if you can't laugh at yourself, you'll cry. 
I'd much rather laugh.
2001 Dx'd with UC.  No remission.  5/2008 surgery, removal of 6" of left side colon.  Dx changed to Crohn's.  Remission for 8-9wks after surgery, symptoms returning after resuming 6MP.


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 11/9/2008 10:42 PM (GMT -7)   
(((NAVY))) Im sorry to hear about your mother and also your lack of support. You made me realise I take my mother and family support for granted sometimes, will now try and be less critical of them when I think they are slackers.
Good luck with your Drs visit tomorrow, let us know how you go.
Praying for you.
Jo

Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 11/10/2008 3:23 AM (GMT -7)   
MMMNAVY, Is your doctor's appointment today? I just wanted to let you know I'm thinking of you...... Blessings, Julie
Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax as needed, Prevacid 30mg, Vit B12, Slow-FE (Iron), Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 11/10/2008 6:29 AM (GMT -7)   
Margie - I took what your husband said differently than you did. You are the bread winner, you bring in the health insurance - which for the two of you is essential. So he asked "what will we do if you end up the sicker of the two of us?" Right now I am guessing you work and he doesn't because you are healthier than him. But if the tables turned - what would you do? Woudl you keep working? Would he have to go to work? Would you both go on disability? etc. I don't think it was as selfish a question as you thought it was - but you were there, not me.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 11/10/2008 8:56 AM (GMT -7)   
My hopes and prayers for you and your mom. Sorry all this is on you now. I cant say much about family understanding. Mine has done all they can to find a cure but done nothing to understand what life is like when you cant fix an illness. I can say that we understand and we are with you but I know its not the same as someone being there. Just hang in there and let us help if we can. (((((((((((Navy)))))))))))) big hug for you..
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 11/10/2008 11:23 AM (GMT -7)   

Fitzy,

   Yes, you are right, his concern was for both of us, he loves me dearly. He is the first born male in his generation from a patriarchal society, and I go on the defensive really easily after 35 years of marrage. He was ill through much of his childhood. My first sign of a flare, is a hint of insecurity, this panics me, I hate mental symptoms most of all. He is a big baby, who went out and got himself a feminist. Go figure! In spite of my feminist attitude, I furthered much of it. I came from a family with much grieving and illness, so I fell for way too much. With Crohn's and stress, it is self preservation that requires me to expect all that someone has to give, from the whole family. They expect me to give 110%, as I always have, but some days my spoons run low, and it seems they just still don't get it. In his case, he acts as if I am not allowed...Lots of sighs and snorts. LOL.


              Never go faster than your guardian angel can fly!                  
     Be Patient And Tough, Someday This Pain Will Be Useful To You 
 
 Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
                                                Margie11

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