I have never posted on this site but after my drive home tonight and my mind going crazy I just wanted to post something that made others realize how lucky they may be despite these crazy diseases.
I have a wonderful family (or at least most of the time...
But now the idea of dating, yuck! Plus who wants to be with someone that has these problems and might develop and probably will develop more in the future????? Ok, off that soapbox.
I just wanted those of you who have a husband and or children at home just realize how lucky you are. Because having people in your life who care is good but not the same as having people who live with you care. Those people that care about how you are feeling every day or care about how each doctors appointment goes or helps in making those tough decisions about what meds you should try. It stinks doing all those things on your own. So I guess my point is that anyone who is reading this and has a husband and children just give them a big kiss and realize how lucky you are despite having this disease because I am envious...I have a child, a daughter who is five. You are welcome to borrow her for an afternoon and then you will probably be grateful for not having any.
Ya know I thank the Lord for my hubby and children, they're the greatest. I have all the love and support I need when I am down. I know I'm very blessed. But I also know women who don't have the support of the people they live with. They are made to feel inadequate and guilty because of their disease. Some of it from a spouse is fear I know but I can only sympathize with that just so far. Kids, especially teenagers are mostly just selfish but they eventually grow up, hopefully to be more mature and understanding. At least that has been my experience with my kids.
Having a dibilatating condition or disease with no cure and very little relief from pain is taxing on the best of strong families. A weaker, maybe dysfunctional family is more likely to cause irrepairable damage and heartbreak. Yes, a good cry on a supportive spouse's shoulder is worth it's weight in gold and I do not take that for granted for a second. You that suffer this alone and have very little help and support are the real heroes to me.
I do agree Moana, that some RA patients are not all supported by the people they live with who are suppose to care about them and are made to feel inadequate and guilty...I was one of them before my separation so I know what that side feels like too.We dreamed of retirement and worked really hard to make our dreams come true. Our dream was to travel full time and live in southern Mexico on the beach for 6 months of the year. We've only been able to partially live our retirement dream but we both know it's better than not living any part of the dream. We've modified our retirement dreams because of the disease and he has always supported these changes without one word of complaint.
He's supportive, compassionate, and curious about the chronic illnesses and is willing to learn all he can. I don't know what I would have done if he hadn't come into my life. I never take him for granted because I know that he's special. Some things are meant to be and we just have to be open to them. Lindy
Wow! This post couldn't have come at a better time for me. I separated from my husband last November because of his alcohol abuse. He was fully aware of my RA right from the beginning. Not only from me but also from my best friend who set us up. Yet, when I had a flare up a few months after delivering my daughter and couldn't even stand at the sink to wash a dish, he became verbally abusive. Fortunately, I came out of the flare rather quickly but I wasn't interested in being with a man who couldn't be there for the bad as well as the good. Adding the drinking on top of it was just too much for me.
As for dating, I haven't even been able to tolerate a man for more than a few minutes at a time so dating has been out of the question. Cordelia- I admire you for being able to get back out there.
Lindy and Linncn, very sweet. What gems of men you have? And that's why I am out there dating because I thoroughly believe there is someone for me exactly like that.Hey Cordelia...if I were a man, I'd date ya!!! Yes ma'amThought so, thanks Linncn.
Cordelia, there are a lot of good men out there. I dated for 12 years, was engaged twice (neither one compassionate enough) before I accidently met my soon to be at a friend's party. We talked all evening and he promised to call me to make sure I arrived back home safely. An hour later he called and we talked for another 3 hours. He kept his promise-how unusual was that?
Because of our busy work schedules and both of us traveling around the country we didn't have a first date for a month, but we talked by phone every night no matter what city we were in. After our first date we started to date exclusively and the rest is history.
A husband was the last thing I thought that I needed or wanted. I was independent, owned my own home, didn't need anyone to take out the garbage. He arrived at the perfect time in my life and I wouldn't be where I am today without him. He's made RA/PA easier to bear. Keep dating and keep an open heart. Lindy
Gee guys, I love to hear blessings being counted! My ex couldnt bear the RA effects. After D-day I raised my 2 girls alone, 8 yrs. So I had my kids and super helpers they were too. I worked my job and they did EVERYTHING at home. After they were married/gone I felt so lost and alone, just working part time. I never dated for same reasons you guys gave. 5 years passed. Then a relative-by-marraige to my daughter became interested & we married, me & my ROCK now. Get this, he is blind and I am as beautiful as he wants me to be, says he. Now we share body maintenance appts together & medication schedules, LOL. SueThat's a great story!! ThanksYears ago a male coworker suggested I not tell dates that I have RA, because most men don't want to deal with the baggage. I was surprised as I'd always been upfront about it.
Not long after, while doing one of the many volunteer jobs that I'd had over the years, I met the ONE.But I don't think a partner has to be a spouse. My sister is single and my mom (74) and aunt (84) moved in with her over the years. They are a great support system to each other. They divide up the chores, the finances and do almost everything together. My aunt fell a few weeks ago and had to have surgery on her femur and they were there for her. They tell her to hurry up and get better, the gardening needs to be done
Thanks all for sharing your stories that made my heart smile...I know that sounds cheesy but I don't know how else to express it.
I do realize that being single can be a blessing in the aspect when I have a bad day I can lay on the couch, cancel my plans with friends or family, and just take it easy, which is hard since I have never been a couch potato but I don't have to worry about anyone else. I can focus on me feeling better, which leads me to a situation that happen this summer. My niece (that lives out of state) stays with me for six weeks in the summer and I have another niece that lives closer that comes over a lot and anyhow they were staying with me and playing downstairs and I was upstairs and on one particular day I hurt plus I was PMS'ing which makes you more emotional and I was crying some and they came upstairs and could tell I was emotional no matter how much I tried to hide it and it broke my heart to see the concern on their young faces...It broke my heart I hated it...so my point is that I guess there are blessings to be found in every situation if we all look hard.
Just remind me of that when I get depressed about being single in the future..There are blessings to be found in all situations, Sonz and we will remind you of that when you get depressed
Cordelia,
I also experienced the selfish thing. Maybe we married the same man.Another scary thought is that there could actually two of them that selfish in the world
I am newly dx, but have had ignored symptoms for about ten years. I would like to be in the catagory that others are in with loving and helpful spouses. Looking back my hubby has not been very helpful. The kids and I have only come in when he had time. He was in the Military for 21 years and I have done it all. I have even installed toilets while he was at work, because the bowl cracked in half. (my son says he is not getting married until he can find a women that can put a toilet in) So, consequently, I have done the whole disease thing by myself with a little help from my teenagers. So, after 19 years of marriage I feel lost and alone, and it is breaking my heart into little pieces. I got married forever, so divorce at this point is not an answer.
I guess my point is for Sonz, be happy with the freedom you enjoy. You could luck out (and for me it would be lucking out) and get a great supporter, but you could have what I have and others have. Also, with kids come a lot of days doing things for them when you don't even feel like rolling over. Be happy that you do not have to shoulder the responsibility of EVERYTHING by yourself when you HAVE a healthy spouse.
I count my blessings every single day that my husband and daughters are as wonderful as they are.
I have often wondered just how the single parents with kids or anyone that is single does it. It just amazes me how you can do it and I have a tremendous amount of respect for those people that do it on their own.
I agree. Life is a lot less stressful without hubby's drama. And there was a lot. Always him first. No room for anyone else. He does spend a lot of time with his daughter however it has to be at my house which I am trying to stop without cutting off all visitation together. My hubby lives with mother and daughter can't go there. She has lead posioning and inspection of my house and MIL's came back with hazardous levels of lead. Thankfully, her evaluations came back that she had no brain damage as a result of her lead posioning. My home has been deleaded however MIL refuses to do anything about hers. She lives in public housing which means there would be no cost to her at all so as far as I can see there really is no reason not to get her home deleaded. More reason to because my SIL brings her 4 yr old there almost everyday for hours on end. Isabel's dr, my daughter, said she couldn't be there for more than 1 hr in a 24 hr period.
OMG Steph, how could she not want to get the house fixed? Does she realize how hazardess it is for her grandbabies and herself also. OMG people like that irritate me to no end. Espically since she wouldnt have to put any money towards it. Thankfully my husband is finally (it took awhile lemmie tell ya) realizing my limitations. Kelsay is really good about it however.
kelsaysmommy: I honestly have no idea but she absolutely refused. Actually she initially lied and said that the inspector found nothing there. I don't think she realized that the inspector who did my house and the one that did hers would talk. I don't know if she realizes the extreme danger or not. I know I have tried to explain it to her but she doesn't want to hear it. How old is Kelsay? My daughter,Isabel, is 2 so she doesn't really understand and is too little for much of an explanation. I do tell her when I'm sore that Mommy has a boo boo and she's good about being careful.
Kelsay just turned 5 and has grown up with mommy not being able to do certain things with her. Now that doesnt mean she doesnt have her moments cause well she is 5 so she does have a lot of those. But she knows that she cant rough house with mommy and is very protective of me when I have to go see my RD. She always asks if they are going to give me a shot, which im not sure why she is so worried about the dr giving me a shot when i give myself 2 shots here at home. But kids are funny. And whenever she comes to the dr with me she always "helps" the dr look at my hands, feet, knees etc. It's really cute. She has said since she was really little (like 2 or 3) that shes going to be a Dr and work with mommy dr to make her feel better.That's so cute. You really have a compassionate little girl. Maybe she will be the doctor who finally discovers a cause and cure for RA.Shelley - that is really sad about you and hubby. I am sorry you feel so lost and alone. He doesn't seem very conscious of his family. That kind of stuff is heartbreaking. I wish things were better for you.Thanks for this post! Nice to read all the stories.
I am so unbelievably (SP?) thankful for my 4 children! Could not imagine life without them...I don't think they really understand my RA though--they know they can't grab my hands, and they have to watch so they don't step on my toes, lol. My oldest DD is just about 14 and she understands the best, obviously--but it wasn't until I told her that some people with RA end up severely crippled that she understood that I was actually sick, not "just sore and grumpy." My youngest was just about 1 when I was DX. ( she's just about 17 months now) and my boys are 10 & 7...they don't really get it either, but my 7 yr old gives me foot rubs when I offer him a little $$, LOL!
Now, my husband.....hmmm...maybe it is that he's just scared about it all- but I can't really say he's supportive at all. His main worry is that he's not getting sex like he wants to....seriously, that's his main concern. Like the other night--I was just pooped...running a fever, etc. I just needed to sit down. So he orders me to go sit down and put my feet up---he got supper made, fed the kids, even brought me my supper while I sat. I thought, " Yeah, he's getting it!" Then him and the boys leave to go practice shooting their bows and I see he left a note on the table..." when I get home, how about you and me........you know." AAaggggghh!!! So hope, he didn't get it. I gave Hannah her bath, fed her snack, put her to bed---and went to bed myself. I'm sure he got the hint when the bedroom light was off when he got home!
Maybe someday he'll get it......but I am thankful he did what he did anyway....
Kelsaysmom don't you know that men have the "fixer" "cure" for whatever ails ya?
Amylynn don't ya just hate it when dh does all this nice stuff because he's so "needy"
Copyright ArthritisInsight.com