I just don’t understand? | Arthritis Information

 

Hello everyone,

I guess I am having a pity party, anyone want to join?

Trinity2005

  

Trinity, I'm so sorry. The only thing I can say is that it does take the people in our lives time to understand. It is a grieving process for them too. You can try and educate him on the disease and take him to some doctors appointments. Have you considered filing for disability? That can be hard at your age though.

I think you need to emphasize what you are able to contribute to the family. Taking care of a 2-year-old is a hard task. They are always in motion. The mother of his child is taking care of his child. What greater contribution can you make?

Your medications may turn things around for you. It does take time and this may not be how life is. But adding stress to it does not help. It's okay for him to rant but not to the point of taking it out on you. He needs to think about that.

Trinity, so sorry you are having such a rough time. This is all new to your husband and it sounds like he is kind of grieving for the person you used to be. It's hard for our families. I think you ought to let him see your post.

Be thankful for what you do have: great insurance, nice home, etc. Some people don't have all that.

Take care

CinDee

I am so sorry Trinity.  It is hard when our family or friends don't have a clue how hard it is to function with RA.  I took my hubby to my appts. early on in an effort to help him understand how bad RA can be.  Maybe your hubby could go along with you?  Here is something a rheumy had to say about an RA diagnosis:

The good news is that it won't kill you.  The bad news is that it won't kill you.

I though that kind of said it all regarding RA.

Trinity I am sorry you have to deal with this heartbreaking disease, but do look forward to happier times ahead.  And help your husband do the same.  Right now I think you both in your own separate ways are struggling with the news and the enormity of the situation.

Try to see the world through each other's eyes.  You can only do that by really talking.  It sounds like your husband has attempted to open up to you about his sadness and his fears.  Try hard to hear him without taking it personally.  He is reacting with fear and anger about the disease, and the feelings that come pouring out when we are upset are not always rational or sensitive to the other people involved.  But they need to be shared and dealt with together.  Don't shut him out, and don't allow your life together to become all about the illness.  You have a history of love and happiness together - and right now he is feeling like that is over.  Let him see that it is not, it's different, but it's not over. 

When it comes to the money issue, your husband is feeling overwhelmed.  The enormity of being financially responsible for everything is hitting him hard.  He's scared, he's angry, he's mad that this isn't fair.  And it isn't.  It's not your fault, it's no one's fault, but it isn't fair.  Let him know you understand that.

In real life our men don't react the way they do in soap operas.  The soap opera characters are one dimensional.  They always say the right thing, and react just they way a woman would want them to.  That's because usually their dialogue has been written by a woman, LOL.  In reality, our guys are insecure, selfish at times, insensitive and self-absorbed, because they are human, just like us.
I'm sorry.  I understand the pain the frustration, the despair....Luckily, my hubby is generally pretty good.  However, when we got our updates for our insurances and we now have to pay 20% of everything and higher co-pays and such, he told me I was going to bankrupt him.  It hurt me so much, I just cried and cried.  I know he didn't really mean it like that, he just didn't think before he spoke.  I think the other girls gave some good advice.  Let things calm down a bit and try to talk to explain.  Its hard for them to understand the daily pain, the struggles, that we go through.  Like you said, if only they could live in our bodies for a week!  Love and hugs

Trinity, I am so sorry you are going through this.  My husband is also having a hard time accepting my illness.  I agree that you should show your husband your post and also our replies.  Maybe seeing these will help him understand.  Time and communication will help.

Hang in there and know that we all understand what you are going through.

Trinity, My husband said the hardest thing about being a partner of the disease is that he feels helpless. He said its not about just getting me a pain pill as they often dont work, its not about the housework as he sees me getting frustrated because I want to do it.He often feels he isnt doing enough ( he really couldnt do anymore)and if he does too much I feel bad as I cant do it. He often says , i wish  could have half your pain and share the load. It has taken many years of patience for him to get this way but he tries very hard to get the balance right.Its hard for us to understand this disease but I think its harder for them to accept it.

Odds are unless you are very highly skilled and well paid most of the money you would make working full time would go the the day care center. There are many hidden costs in working - clothes, lunches out, quick fix suppers, car wear and tear, more taxes because of a higher income bracket.

See if you can work on your tight wad skills - stretch your money as far as you can. Research your purchases to get the best price. Make a budget and see where you can cut expenses. Grocery coupons and shopping the wed food sales really helps. Check out the 'Tightwad Gazette' from the library.

Perhaps your husband is feeling terribly alone in the struggle to stay afloat. Perhaps if you can show him how to save money, he will at least know he has a partner in the struggle. Less spending will do the same thing for the budget as more income.

The big plus is to be able to raise your own child instead of the folks at the day care.

hi trinty!.. I totally understand and I would never be able to keep up w/ a child.. truly.

I posted Spoons for you and everyone,  make a copy and hand it to your husband. I emailed it to all my friends.

We just have a weird illness, if we looked sick, or had cancer, diabetes, people would get it..be a lot more understanding.

Pace yourself, the electric wheelchairs at the grocerystores and walmart, are fantastic!!

and keep coming back..

Thank you everyone!  I am going to print out a copy of the spoons.  Sometimes we just need to vent, thank you for letting me do that.

Trinity2005

This sure brings back some old memories for me! Been there and it is so disheartening! I am so sorry thatyou feel this way , and I really empathize with you because I have been where you are so many times.

I do not have any suggestions because everything I did  and acted on did not work out for me too well.It is so hurtful, I know. The one thing you can do like the others had said is learn to trim the budget more. IT is amazing how much extras we have going out that you do not even realize. Maybe you already do that I do not know.

As far as working, if you are anything like me it is all you can do just to keep up with the house and all the stuff for your child, rest is vital and pain is unending. I have to agree that working does cost money and sometimes it is best to stay home with the children even if you are not bringing home ,000 a year which more than half goes to taxes, child care, car expenses, easier meals...ect. just like it was stated earlier.

Your husband is prob just feeling overwhelmed and wants more help with money....it is natural and a "guy thing". Women worry about billstoo, sometimes all the time, I do, but try not to. You cannot help that you have this disease, it is not like you asked for this type of lifewhere you are engulfed in pain, heartache at the loss of your vision of your own future and  to be ill all the time.

Just talk to him and help him understand, if he is closed minded about it, give him more time. I hope you can come to some sort of a mutual agreement and he will soon understand.

jode

Trinity; We've all been there Sweetie. If it helps at all' the first years are the worst. You'll experience pain later in the disease; maybe even worse pain, but you learn to deal with it and also learn to manage life with a chronic illness. You husband will too. It might help your husband to know; that stress will make you worse. He will only make you worse physically by adding stress to an already stressful situation.

I'm now married for the second time (And it's a totally differnt world); but during the early years of my disease I was married to another man and we were very young and had young children. Life was stressful enough without adding a painful chronic illness to "our" problems. Life at times was absolutely misrable! After our marriage ended and I was relieved of a little stress that this marriage was causing I saw a difference in the way I felt; physically and mentally. My disease had actually progressed; but it was amazing how much better I could manage now.

I'm sure things will improve for you and your husband. It just takes some time. Try to remember that he's grieving too and obviously very worried about how he'll support his family now with an ill wife. It's a lot for a person to take in. It doesn't give him an excuse to be a jerk; but it might help you over look some of his snide comments and not take things to heart too quickly. It will only upset you and that in turn will affect your health.

I work fulltime; but recently picked up an Opprotunity Seekers magazine (Everyone could use some extra money). There are honestly some good ideas in there for making extra money from home. Some are complete scams; but there are ways you might could contribute to the income. Pick one up next time you are at the grocery store. Definately follow the advise given about watching your budget. Nothing will make your husband madder than you spending money on things you don't absoluelty have to have especially when he's trying to just keep you guys a float.

Hang in there Sweetie.

The most important thing to know, Trinity, is that you are not in any way to blame. The pain you feel is real. It's unavoidable. It's not your fault. No one wants RA, but a lot of us have it. It's a common disease.

Of course you can't work and take care of an infant or toddler and manage a major RA flare. It's out of the question. Here's a test for your husband. Get one of those dog brushes with metal teeth. Tell him to stand on it - and put all of his weight on it. Then tell him to strap it to his fingers and try to turn on light switches, button his pants.

I swear, I'm going to invent a pair of RA training gloves and shoes so that doctors (they "know" what we're going through, but really, they don't have a clue), spouses, children, friends can have a little taste of what we deal with every day.

Lovie is right - the first year is the worst year. Once you get diagnosed and learn about your disease, start some treatment, join some forums, you learn to cope. You won't come across much that someone else hasn't already dealt with. I've learned that people in the RA forums tend to be some of the kindest, most compassionate people around.

In your husband's defense, he's right to worry about money. RA is an expensive disease. He has to earn enough on his own to support both of you. And, I'm sure he's worried what is going to happen to you.

I love the quote above: The good news is, RA won't kill you.
The bad news is, RA won't kill you.

There will be times you wish it would, and there will be other times when you are so very grateful to be alive. Good luck! I'm serious about the dog brush.
trinity - oh my gosh i had tears in my eyes reading your post! i am so sorry that you have to go through all this with the man who promised you for better or for worse through sickness and in health! he really should step into your body! i wish there was a way he could become immobile and hurt to even laugh! people like that really break my heart. my aunt is so dumb to the disease she says things that really mess me up like describing me as "her hands are noddy and bumpy and dont bend like shes sick" i dont think she means to but it really hurts! maybe one day soon he'll wake up and think oh sh*t my life really isnt that bad, im going to make trinity's even better!!

gosh that makes me SO thankful for my wonderful boyfriend!! goodluck trinity if you need me to come give him a good smack in the face let me know I HAVE FREE TRAVEL BENEFITS!!! :)

keep your head up and dont let anyone get you down hey even though you cant run around the backyard im sure your 2 year old is  very loved and thats what matters most!
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