Author Topic: Effects on Marriage  (Read 10242 times)

laurajohn

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Re: Effects on Marriage
« Reply #15 on: January 26, 2011, 11:43:51 AM »
Oh Nancy, I'm sorry!  Bless your heart! 

I'm sorry I created so much turmoil with my post--lol!  I needed to vent today too.  I don't think I've said three words to my husband in about two weeks! 

quietdynamics

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Re: Effects on Marriage
« Reply #16 on: January 26, 2011, 11:51:38 AM »
Dear Quiet, tell me, why did the topic upset you so much?  Was it sadness for the women who dont have the same support as you? Was it because I was slamming my husband? PS I really did want to punch him in the face!) Why were you so upset? People have different relationships with their spouse.  I do want to say congradulations on your life choices.

I thought about what you said about saying nice things. I do have 3 nice things I can say about my husband. He doesnt have a beer belly. He has great hair. And he love to fix things around the house. Its taken me thing long to think of three things. You really are lucky!

Sorry ...it wasn't this post that had me shaking. It was as a new person reading what people were feeling (symptoms). My Rheumy had said that Sjogrens was the worst. When I searched and all NIH mentions was dryness...I seriously thought I must be mis Dx'd.  
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

CAT1962

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Re: Effects on Marriage
« Reply #17 on: January 26, 2011, 02:15:01 PM »
NancyLee, it's good to vent. It DOES help! PM me ANYTIME! I was thinking...MAYBE if I took my husband to the Rheumy appts. with me, or the Neuro...BUT, you know what....both are so blase about this stuff that they would give my husband that "just blow it off" look, and I would be doomed.  :'(

I mean when I got my blood work results back the Rheumy said (while writing, not even looking at me), "You have Sjogren's diesease..."  He then handed me a post it with the number of our local Research hospital's number on it and said, "I'm not turning you away, but..."

hmmm...

quietdynamics

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Re: Effects on Marriage
« Reply #18 on: January 26, 2011, 03:33:14 PM »
Hello all..
In my case I am lucky!?
My first husband had an injury. He became highly abusive to the point of police intervention. I went to the Dr. with him, the many trips to the ER. Got him into therapy and a drug program to get off prescribed drugs, etc. It became clear that he was a very threat to me and the very young children. And it became very clear that he was consumed with his condition. And chose to stay in his all consuming heck. Yes, one time his was looking out the 2nd floor window and I want to do a kung fu kick and have him go flying out the window. When I wanted to take the children out, if their father wanted to come, I felt dread ...as he would always ruin any attempt at fun. I actually put our young son in day care, to spare him the almost daily visits to Dr.s and being around sick people. As the non-sick spouse I can tell you it was exhausting.
So having experienced living in someone elses heck, I am determined not to draw or expect others to waddle in mine. This is not a vent, just my own lesson learned.
Now new life/different partner...but, still lessons learned:
say 3 good things
ask for help (no one is a mindreader) and always say thank you
help him whenever I can (little things mean a lot)
When someone asks how I feel give a short answer and say thank you.
If they want to know about this condition direct to google...lol


Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

nancylee

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Re: Effects on Marriage
« Reply #19 on: January 26, 2011, 04:27:39 PM »
Cat 1972. how is your White blood count and platelte count?  in one of my early responses, someone mentioned they had a blood disorder. this woman should be watch very closely. This sjorgens is bad stuff. I rememerb when I was first told I had it was in 2005. No big deal. My doctor had taken blood but said he was sure I was fine and then sent a pamplet in the mail that I had Sjogrens. I never heard of it before and NO ONE CALLED TO TELL ME. Of course I got another doctor who has been watching me and my blood. Things stayed stable for a couple of years. then all heck broke loose This os NOt something to ignore. Regularily, Its important to get a CBC, sed rate, ANA and RA factor as well as a LDH,as well as all teh other stuff they look at ssb/ssa etc. I am watched by a hemotogisist, an oncoligist , rhumitogilost , a pulmologist, and a liver doct as well as a regualr physician. I am sure there are more i just cant rememebr. YOU ALL HAVE TO BE YOUR OWN AVOCOTE for this. Its deadly when it turns ugly.


mews

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Re: Effects on Marriage
« Reply #20 on: January 26, 2011, 05:04:03 PM »
Nancylee I am so sorry... that said..you sound like your a very strong women..we all need to be, a Dr once told me about my critically ill baby at the time .." no one can take care of her like you can "!!!!

No one will love us or even like us like we can, we have to take care of ourselves! My husband didn't give a crap until I made him start to come with me to the Dr.This way he heard for himself what was wrong. He just started a new job in a new state and we got the Family Leave Act, now he fly's with me every month and takes very good care of me, and I of him..he has his own issues of brain fog and thyroid stuff, honestly I'm not sure how we get from here to there!!!!  LOL

My Urologist just asked me if I'm still having sex, I laughed so hard I wet myself right in front of him..Then I said do you want us to get stuck together :o... Kill'em with kindness, thats what I did, it really works well.. just don't bite your tongue off! ;D.

Feel Well All
Mary

Patty

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Re: Effects on Marriage
« Reply #21 on: January 26, 2011, 06:19:16 PM »
How could this not be stressful on a marriage? I have a wonderful, supportive husband of 27 years who believes I am sick even though I have never had a firm diagnosis and even he gets tired of it at times and tired of the limitations the illness places on us. We had expected to be out enjoying ourselves at this point, now that the kids have flown the nest. I tend to get irritated quickly if he complains (which is rarely) and have to remind myself at how patient he is with all my complaining. I know he is unusual in his supportive attitude. He tends to get angry with my doctors for not "fixing" me, which is a lot better than him being mad at me. Don't your spouses remember what you were like before you got sick? I worked 50 hours a week, did lots of volunteer work and hosted every family event for both sides of the family. Our spouses should know we haven't chosen this life. I would give anything to get my old life back.

CAT1962

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Re: Effects on Marriage
« Reply #22 on: January 26, 2011, 06:31:54 PM »
NancyLee...

First of all, thanks for shaving 10 yrs off of my age.  ;) hehe...My blood is okay. My monocytes were off, but he didn't seem concerned.

nancylee

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Re: Effects on Marriage
« Reply #23 on: January 26, 2011, 06:56:23 PM »
Mews, I liked that you laughed so hard your peed yourself. that happens to me when I laugh, cry, sneeze, cough, jump, kneel and just about anything. I think I need to see your urologist..

And Cat 1982.  see how fast we can turn back the hands of time?? By the way... is that the year you were born or graduated fron highschool??

mink

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Re: Effects on Marriage
« Reply #24 on: January 26, 2011, 08:45:31 PM »
Hi everyone ,
   just like most of you I have a HUSBAND. I've come to realize that Just like meld said they do wanna fix everything and in finding they can't, it upsets and sort of brings them down. I've tried bringing him to drs' appts but he'll tend to drop me or pick me up but not go inside. resentment does build up especially when they seem so nonchalant about things and seem to think that life can go on as before...I wanna scream sometimes to the top of my lungs and say "HELLO CAN'T YOU TELL THAT I'M IN PAIN?  OPEN YOUR FREAKIN EYES, NO I CAN'T GO!" but instead i'll say at times let me take my pain killer and give me a few till it kicks in and if it does i'm lucky and i'll go.

I luv the fact that i can come to these posts and share what we are going thru, luv the fact that we can come here and vent too... so if all this is upsetting to some then this is probably not the right place for them.
I have come to understand that this forum is for sharing valuable information, sharing feelings about how sjogrens affect each and everyone of us and our lives including those we love,sharing our disappointments, our ups and downs,new symptoms and old. Alot of us come here for encouragement and a caring word which we don't get at home. So if one of us starts a post about something, it should be respected and not looked down on.

Patty , this is what saddens me the most...that my kids are all grown up and this would've been our time to travel and so on but now we are limited as to where we go and do!

Laurajohn, Nancylee,Shortstuff,Cat1962, Susan,dbab and all the rest just remember we are all here for each other ...my friend who also has sjogrens is currently in the hospital for last 2 weeks because of TTP. It's one transfusion in back of another and so forth...sending good vibes her way

irish

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Re: Effects on Marriage
« Reply #25 on: January 26, 2011, 10:18:37 PM »
My hubby is very supportive and understanding. He doesn't even bug me about my strange insomnia and sleeping habits. He always asks me where I am going to sleep tonight.

He has really put up with a lot the past 20 years as I have not had energy, etc. But, on the other hand, he also has autoimmue issues and has had some major illnesses that required surgery and hospitalizations. I have had to take care of him a lot while I have been sick. I have lost track of the times he has had a catheter while at home and I have to take care of it, etc. I keep track of his meds and fill his boxes,etc. However, his attitude as improved greatly because of all his health issues and I am so thankful. If he hadn't gotten all these health issues I think he would have been more critical.

We all do all the stuff that needs to be done while we struggle with a lot of strange feelings. I know that there are times that I just want to get in the car by myself and take off to parts unknown. Just by getting out of the house I feel better and I love traveling by myself and taking the back roads. I have always been a loner so enjoy the solitude.

I told my DIL a few weeks ago that this has been a hard fall for me and that I thought I was having a burnout after the past 14 months with hubby having cancer and then a stroke. Lots of responsibility caring for him and arguing with him. Men don't do well with being sick and everything has to be explained to them. To be fair, I might add that being married to a nurse can be a real downer at times. On the other hand, he gets free nursing care.lol

Anyway, I told the DIL that this fall I felt like I just wanted to rent an apartment and go hunker down and curl up in a ball. I had and have been so tired and so many infections. Sounds crazy, I know. I still love my husband but there are times in our lives that we just need time alone to rest and heal. I remember being sick when the kids were little and having to lie down and rest a lot. Seems like if I wasn't working I was in bed resting. Now I am sick and I can't sleep to get the rest.

Life is very tough and my prayers go out to you gals who are so bogged down with the relationship issues. I will add that men have such warped senses of what is going on with a sick wife. I learned again recently that I have to tell hubby in greater detail what is going on. Also, if there is anything men don't like to do it is go to the doctor--even for themselves.

I think that down deep these husbands of ours have fears that just nag at them. They can't fix us, they don't know what is wrong with us, they think we are making it up (either all the time or some of the time depending on the man), they worry about the medical expenses, especially when we can't work anymore. Then with you younger gals, the hubby worries about what they will do if something really does happen to you. THey have no idea how they will cope with kids, a job and meals and a home that needs to be taken care of.

I also think that even the big macho guys who make smart remarks are scared down deep inside. I had to go for counseling a few times over the years and as I think back it strikes me that I was sick. I was taking care of the house, but my self esteem was so low because my world was so small. I didn't have the energy to do anything much besides what needed to be done within the marriage and as a mother. Sometimes we do have to havae someone professional to talk to. They are an outsider and aren't judgemental. I know from experience that when speaking terms are strained between husband and wife it is felt by the kids also. Makes for a lot of stress within a household.

This has been such a good thread for all of us. What would make it even better is if it could have been done in person with a 5 day sleepover at a resort. Prayers and blessings to all or you and your spouses. Irish

Meld256

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Re: Effects on Marriage
« Reply #26 on: January 26, 2011, 11:18:09 PM »
irish,

Such good points...:) I must say my husband has been very good about my odd sleeping habits lately. He must go to bed early since he gets up at 4:30 a.m. for work. I rarely can go to bed at the same time. I usually feel better late in the evening, and stay up very late. On occasion I'm still up when he gets up! I feel blessed I'm no longer working at a job.

Yes, I believe most spouses are afraid of what will happen next to us, to our families. They fear the unknown, just like us sometimes. We really have more in common than we think. Men and woman just express it differently. Or, as my sister put it so well recently "they don't MEAN to be stupid". lol

Irish, that's such a stress with you and your hubby ill. It takes a strong relationship to survive all that.
I witnessed this with my MIL and FIL in 2005. Two strong, retired people enjoying life in their 50's until...my FIL suddenly had some weakness in his hand. He got to the ER thinking it was a stroke. Instead, they found lung cancer that had metastasized to his brain, and was stage 4. MIL was caring for him and three months later had a stroke, which paralyzed her right side. She was hospitalized for 2 mths. All of us helped care for them both, but when she came home she insisted on caring for him. Both of them in wheelchairs; unbelievable how they both took care of one another, physically and emotionally.

dainbramage

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Re: Effects on Marriage
« Reply #27 on: January 27, 2011, 04:13:06 AM »
My husband doesn't act like he wants to hear anything I have to say about my illness. So I started coming to this sight more.  Then all of a sudden (it was building up) he tells me I don't tell him anything (what?). Well when you have "put me down about how disabled I am and HOW supposedly I am NOT coming to gripes with this syndrome (WHAT?) ???, and how everyone sees I am NOT social and how I am TIRED ALL the time, I am just so tired of him.  He just told me how his mother does not understand what I am going thru. Why did I not come out to talk to her a couple of months ago, instead I went to the back room and laid down. (SO YOU COULD NOT TELL YOUR MOTHER I WAS TIRED?). He keeps telling her, but he is tired of making excuses. (WHAT EXCUSES?) Why did I NOT tell his mother about the kids dentist appointment? Why did I not tell my parents about my swollen lymph nodes? Why did HE be the one to tell them?.......................................
MAYBE I COULD NOT REMEMBER??????Why did I talk about this stuff to the people I work with but not him? (REALLY, REALLY? ???) Maybe they listen or maybe some understand because they are going thru the samething.
NO SEX, NO EMOTIONAL SUPPORT, NO FEELING GROUNDED, NO HELP, NO SUPPORT, NO NO NO NO ETC.....................

mink

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Re: Effects on Marriage
« Reply #28 on: January 27, 2011, 04:43:00 AM »
Ohh dainbramage I'm so sorry you have to go thru all that bullhitch! Thats all I think alot of us are asking for ...is some understanding, but they just don't get it >:(....Well i'm here for you girl whenever you need, you can PM me to if u like .....Plenty of hugs coming your way :)

mews

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Re: Effects on Marriage
« Reply #29 on: January 27, 2011, 06:01:38 AM »
Irish you said that so well...Your a very wise women!!! My husband is now very supportive, but I do find it's all in how I speak to him also...If I'm not well and I'm nasty he will only take so much of it.. "HE'S ONLY HUMAN", I have learned to swallow my pride and say "I'M SORRY" a lot, and I make him say it too when he's mean!!!!

I am a true believer in "What goes around comes around" or "You get what you give".... I always said my husband is my fourth child.

 I thank God for this forum because, I will only tell them so much because I can see their eyes glaze over and then I know they have had enough!!!!!

Feel Well All
Mary