Monica,
We all have been or are currently on the prednisone merry-go-round. I have also been up and down, it's a love hate thing. I have gained 40 lbs since I have been on it for 8 months.
As far as your husband not understanding, I personally have found that
reading articles to him from this forum or on other RA sites helps them to understand more how horrible this is and that YOU do not have a choice how you feel. It is hard for healthy people to grasp the full meaning of RA and fibro. I get frustrated on days I can't do the things I had planned. Luckily my fiance has taken the time to read articles and
has learned my limitations.
Knowledge is power. Hang in there and come back whenever you need a shoulder to lean on. We are here to listen and hold each other up.

Sorry you're in such a low spot.

Illinois, huh? I grew up in Iowa, and to me, November means 38 degrees, grey, and raining. That's enough to depress anyone, even before chronic pain and obtuse husbands.

What are you taking for your RA besides prednisone? Are you on a DMARD and/or biologic?

Monica I just got off the merry go round and as usual came down with an upper respiratory thing so I can't take the mix which throws me into a flare!!! It gets really old and boring; so yes I understand. My husband tries but he lets little comments "slip" like energy creates energy. I could just scream sometimes, but I hardly understand this disease so I guess I have to give him credit for trying. Hope things get better for you. Trish

I am sorry you are feeling down. I get that way too. My husband tries to understand but sometimes he just doesn't get it. I have told him about some of the conversations that are on here and he tells me that just because it happens to someone else, doesn't mean it will happen to you. But this place helps me to understand more of what is going on with my body. Sometimes it's just nice to know that someone else feels as bad as you or at least understands how you feel. Please keep us informed on how you feel. God Bless you!
Wendy

Not sure if this helps but your not alone.
Been on Prednisone shy of a year waiting for medication that will work. Heck just getting medication can be a challenge.

Always breaks my heart to hear partners or families that don't understand or attempt to educate.
Makes this so very much harder to deal with. Understanding is so important. Really if you think about it the support from those closet to us can be as important as the treatments. Gives us courage & strength to just keep going.
As much as I hate to admit this my husband is finding it difficult to deal with. I thought it would get easier for him but it's not working that way.
Then again I did everything & I mean everything.
Never realizing how much I handicapped my family.
I get how hard it is when you just want them to be there. They can't if they don't attempt to educate, communicate & understand.
I plan on talking to my family soon. The doctors have spoke with my husband. One telling him I would live in chronic pain for the rest of my life. Just refuses to accept this.
So yes my heart goes out to you.
Perhaps sharing some of these posts.
Heck maybe we should start a discussion for those families who think it's just us.
Something they can read directed at them. Food for thought.

Energy, well I'm ADHD so it can help but feel having this a long with it is a cruel joke of sorts.
Love to laugh & joke around. It's been hard lately for various reasons but I miss the old me & truly pray I find my way back.
For now lean on us & know in no way are you alone.
Here's to better days a head.
Hugs,
Sammy

To engage in stereotypes, men love to fix things. When people they love aren't well, and don't seem to be getting better, they get frustrated that they don't have a fix. If only we responded to WD40 or JB Weld, marriage would be much simpler.

My husband and I are actually seeing a couselor because he stated he resents me being sick along with other things. Our marriage is on borderline of being over if this does not work. Before I got sick, I worked 60 hours didn't bat an eye, and played sports. Now 36 hrs working is very hard and I do what I can with the house. I'm a nurse so it just makes it that much harder because I'm on my feet, but I love helping people.

Someone asked what else I'm on: Plaquenil, Sulfasalazine, Rituxan, Gabapentin, Metaxalone, Topiramate, Vicoprofen, Prednisone.

Sorry it took so long to respond I was waiting for an email saying someone wrote.

hey monica

congratulations on your 36 hours of work and that's full time. what part of the "resentment" does your spouse have? that you are bringing in less money from work cut down in hours? d that you are around more? that when you are home you are healing and/or resting if you can? do you have kids also? i am glad you have a medication cocktail and i hope you have a good rheumie. i am sorry you are in a flare. do you sing at home or do you miss collective singing somewhere else? i am trying to see where you could get back some of your joy in a small bite. we get it. hang in there.

hugs
depot

He believes I should do more around the house. Most the time I'm so tired after working I have to recoup; however, its not like I don't do anything. When I'm in a flair, the house becomes a disaster because I'm not cleaning. We don't have any children just 3 cats. Most the time when I'm happy I just sing by myself.

I know that you have not been able to do what you use to-but we still have to find our own ways of doing what we would like to do...even if it takes us longer than normal...we are like the little engine that could :)

I'm sorry you are going thru all of this. I had a really hard time with resting when I was fatigued and hurting..I would look around my apt and think of stuff I needed to do. That was hard to adjust to. I'm now getting used to it being a little chaotic. I did what I could to organize it somewhat so that things had a place but things like dishes and laundry just have to sit sometimes.

I hope things work out for you with counseling. I hope he can get to be more understanding about all of this. It's tough enough going thru it without supportive people. I can relate to that. Hugs to u- Donna

I forgot to add that I have been needing Prednisone for 14 months or so and everytime we get below 10 mgs it hurts so bad I have to keep it up. I hate it. I also have Fibro and it gets frustrating because, for me, it's hard to tell sometimes what is RA pain and what is Fibro. My Rheumie did some blood work showing RA was very active but everything else hurts as well. It's definitely a merry-go-round.-Donna

hey monica

i am sorry he thinks you should do more around the house than working full time and managing your health, putting up with continued prednisone, and having a new additional diagnosis of an aneurysm....

i have been with someone who treats me exactly as if i was the person 10 years ago: physically care free.

none of us are he same person 10 years ago least of all those carting auto immune disease(s) around....

remember your cup runneth over auto immne wise and you are no going to be martha freakin' stewart in the house cleaning department.

keep singing.

and here is an oldie but goodie...thou shalt not insult our limitations...a good hand out for any woman or man cave....

http://www.anapsid.org/cnd/coping/looksick.html

depot

I wanted to thank you all for replying. I appreciate it. My mood is doing a little bit better. I have worked the last two nights. Joints are aching but I am feeling better.

I like that " the little engines that could".
Yes men are "fixers".
Mine admits he does not like to see me in pain he'd rather avoid it.
When you go from super women to this it's a huge adjustment for everyone.
Yet everyone should keep in mind those vows. For better or worse.
Depot is right none of us are the same person 10 yrs later.
Glad your doing better. Music soothes the soul so keep on singing.
Wishing you good days ahead.
Sammy