Supportive Wife

kooks
2 Recommendations

Hi everyone,
I feel like i am going to lose my mind i have been so supportive of my husband but sometimes he can drive me crazy. He's back on prednisone and he can be so nasty at times i don't like when he is on this stuff. He is such a gently, loving man that i still can not get used to this side of him. His foot has been hurting him again and he gets very cranky because he cannot do the things he wants to do. He is going hunting this weekend with his dad and brothers and our son so i am looking forward to a break i feel quilty even saying that but i need it . After running to doctors and trying to get him approved for SSD and working 6 days a week i need a vaction! Sorry for venting like this i know how sick this disease makes everyone i just needed to vent to someone. You guys are always so supportive thanks for listening!!

God Bless You All
Connie

19 replies

micheleb

It definitely sounds like you deserve a break and thats ok, don't feel guilty! Pred can make some people really nasty, me included. Even though you know its just the drug, its still hard to live with. Have you and hubby spoken to the doctor to let him know just how bad the moods are? Maybe the doctor could suggest another drug to try that might allow the pred dose to be reduced and hopefully the nasty mood that goes with it! Hang in there!

Paradox

I second Michele's suggestion. The mood swings normally become easier to control with time (I'm no longer ranking kodiak bear like I was when I started and spend most of my time between the teddy/koala and maybe up to California black on occasion). If he isn't having improvment it may be time to see how he does with a little less prednisone and possibly a second agent like methotrexate.

Mani

Wow Kooks,

I totally feel where you are coming from (or should I say my husband feels where you are coming from)!! Just yesterday he said to me verbatim: "What the h ll is wrong with you, you look like medusa and you sound like the devil, not a good combination!!" Actually, I have been on high dosages of Pred and they are taking a toll on my usually happy demeanour. So please be patient, I know how he feels, and you seem like a "gem". I get really afraid sometimes because I am afraid I might push him away. I am sure your hubby feels the same way....We know how lucky we are to have supportive spouses but it is just so difficult to control the ranting and raving of these mood altering drugs!!! Domenic works so hard 6 days a week, taking on side jobs to make ends meet while I am at home (returning to work 1st of December). Remember take some time for yourself and try and be supportive, it's the drugs talking/acting not him.

Take time for yourself too!!

TexasAngel

Oh Mani!! "What the h ll is wrong with you, you look like medusa and you sound like the devil, not a good combination!!" That statement made me laugh so hard I nearly wet myself!! Because it can be so true!!

Hang in there kooks. He doesn't like acting like crazy person anymore than you like him being that way. And Mani was right, it's the medicine, not him.

kooks

Thank you all for your support,
Wayne has not been on preds for a while but now that he is on them again i forgot how bad it can get.
I know it's the preds so i try to support him as much as i can. Mani that was a funny way of putting it lol!!

gonenatural

Hi Connie,

We all vent, that is one of the reasons for being here.

My friend doesn't understand that prednizone does this. He just thinks it is a woman being a woman, again.

I have been lucky to have him around cause without him I would have pets and drs.

Just this morn I asked if he was going to wish me good luck. I didn't have a very good ct scan but he can't remember cause he says my full time job is going to drs and I am too busy to be sick.

He is lucky to have you and I hope the SSD comes through quickly for him, both of you.

Sincerely,
Gone Natural

theGardener

You might pass this along...

On the Care and Feeding of your Non-Sarcoidosis Persons

—TeeGee

SarcoidPrincess

Hi Kooks! You are not only supportive to your husband but to many people on this site me included! It's ok to take care of yourself. Enjoy your time! I'm so jealous! LOL!

Laura7

I hope you get the needed break you deserve and dont feel guilty. I send a hug your way. God Bless

Laura7

harmles2

connie,
As I type this I'm tearing up, ...... your post makes me see what I already know, that my mood swings (all new since using I started using pred several yrs ago) are not helping matters and make it tuff on my wife.

All I can offer is to say "I'm sorry and I’m very sure yer hubby is sorry" .... just last night I had an outburst, not directed at my wife but at a light switch of all things. A 5 sec blast of anger ... and I don’t know where it comes from: "snap" and its out, I feel like $hit afterwards. For what ever reason I'll snap and want to kick the crap out of something for no reason at all. Truthfully I wish the good Lord would take me home, I do not want to act like this, I'm sure your husband doesn't want to either.

My wife & I have a great marriage, we actually do not know a single couple that gets along or derives as much enjoyment out of (27yrs) marriage as we do. But I know that these last few years of pred and the related "short fuse" have added a new dimension that we didn't have to deal with before.

I think its more than the pred in my case and perhaps also in your husband. Pred makes the trigger shorter, but something deeper is also pushing us. Body aches and pains, most of which are constant but easily bearable, are like nat's constantly picking at us. This raises the irritability ratio a notch or two. But also we have an inner struggle. As men, society teaches us; "us to take care of our families, to work, to bring home the bacon, to be the strong defender." We like this role, it matches our testosterone level, we like being the "big strong provider".

Then something like sarc (or some other strength stealing disease) comes along and all of a sudden, we become worthless. In our minds we are "worthless" or on track to the point of worthless. Like we see in the movies, once we down on the ground, we lay there at the feet of our enemy saying "go ahead, and finish me off". Hope of ever becoming a warrior again has faded. When we marry, our woman may say “I need you”, but after progressive sarc, we don’t have much to offer that anyone would “need”. I’ve told others in this group, ..... if we have 5%, give it to our families, 5% is better than nothing. Yet for a man, society says we should provide much more, its hard to deal with. Each day we are reminded we are not taking care of our families the way we are expected to.

If your husband is like me, he'd want you to go and enjoy times with your friends, to have a life, to not let sarc steal two lives, just one. So PLEASE go make time for the good things.

I tell ya something else, there is no greater motivator to a man than a woman who stands with him. Your encouragement, your touch, your smile, your gaze, does more than any drug or doctor can do. When my woman comes to me, my hope is kindled, with some hope I start to live above my sarc circumstances. It would be very hard to press on without her.

Have hubby read this post ....
http://www.inspire.com/groups/stop-sarcoidosis/discussion/some-thoughts-on- how-to-live-with-progressive-sarc/
... perhaps he'll get some encouragement from a fellow sarc'ee who also goes into some "off the handle" fits now an again to try to live more above the sarc. I've been able to go weeks without a outburst, but I have to work at fostering an enviroment and mental attitude to live above it.

God Bless you both
Harmles2

smurph

Connie,

If it weren't for supportive spouses like you....some of us would never make it through this. We do appreciate you even though sometime we don't show it.

Just try and remember the man you love when you feel like shoving him in the garbage can. :-)

- Sue

smurph

Connie,

If it weren't for supportive spouses like you....some of us would never make it through this. We do appreciate you even though sometime we don't show it.

Just try and remember the man you love when you feel like shoving him in the garbage can. :-)

- Sue

PurpleSnowflake

Remembet to take time for yourself and don't feel guilty about it. November is recognized as National Caregivers Month. Sarcoidosis can be a very complex disease as you know. I sometimes feel like I don't even know who I am on Prednisone so I know how your husband feels. I empathize with you because I know I put my husband through alot. But the fact that you love him and are there for him does matter. I know I feel bad sometimes for being so mean to my husband but I really can't help what the Prednisone does to me sometimes I'm glad I am weaning off after 2 years I need a break from Pred and so does my family. I will keep you both in my prayers.

et723

hi kooks

don't feel guilty its a tough job being the caregiver i too am a caregiver and that prednisone can change your loved one into a total stranger a scary stranger but you love them unconditional and know there is a light at the end of this long tunnel called sarcoidosis enjoy your time alone to regroup and god bless

kooks

Thank you all so much for your kind words it means a lot. Harmles2 i read your post and it was so on the money i am going to print it out for my husband.
We have been married for 25 years and have 2 beautiful children 24 and 21 they have been there for me! I thank god every day for such a wonderful family and i know it's the preds that make him act out he does not mean to. I wish to god this could all go away but i know in my husband's case he is pretty bad it has affected his kidneys and so on to many things to list i am sure you all are aware how this disease afffects everyone. Sometimes Wayne has said some pretty scary things like i wish i didn't have to suffer like this maybe god will take me soon, i hate when he talks like that but again i also know it's part of the meds. Thank you all again for listening!!
May God Bless All Of You
Connie

Cornhusker

Hi Connie,

Bless your heart! I know just exactly what you're going through. My husband has had Sarcoidosis since 1970. We've been through so many ups and downs that the saying "I've been down so long it looks like up to me!" applies most of the time.

I told my husband's doctor that the next time he puts him on those high doses of prednisone I'm packing my husband's bag and he's going to live with him! Unfortunately, the prednisone is the only thing that keeps him breathing. He now has prednisone induced diabetes, has had cataracts removed caused by prednisone, etc., etc. It's pretty bad when you look forward to when they have to be hospitalized in order for you to get a break, but unfortunately, spouses don't get much respite from the care of a husband or wife with Sarcoid.

Take care. Just know that you're not alone and you're in my prayers!
Alice

kooks

Hi Alice,
Thank you for your support there are good days but most of them are bad ones i feel so bad for him that he has to go through this but hopefully this weekend he will be able to enjoy himself with his son and brothers they are going hunting but of course he is already having anixety about going. I told him not to go if he feels this way but he doesn't want to let his son down he looks forward to the male bonding.

God bless
Connie

kooks

Hi Flerg,
My husband cannot take most meds because of his kidney condition, the doctors are very careful about putting him on certain drugs. Thank you for the information i will look into it.

God Bless
Connie

Krissy

All the best to you Kooks, you deserve it. He is probably aware of what it does, but that does not mean than he can control it. I am sure that he appreciates how lucky he is to have you and must feel terrible when he realises what's happening.
Yes you do need a break. Even people without this kind of pressure need a break from each other at times.
I spent 20 years with a husband who suffered from serious depression. I won't tell you what that was like. I'm now on my own with all this sarc stuff happening. At times that frightens me but most of the time it's OK.

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