UPDATE: I feel better! I need to vent this morning!!

[TriMom]

Hi everyone! I don't normally post on DisAbilities, but I do read every now and then, and I know that if anyone could understand you all would.

My DH has RA, and it has not been well controlled for the past year. About 3 months ago he started Humira, and that has been a nightmare. We thought that he was catching colds, and the flu because of lowered immune system. But this week we found out that he is suffering from serum sickness which is basically an allergic reaction to the meds. He has a 103 fever, and the achy bones and skin of the flu. Not good! So now we are back to square one in finding a treatment.

Ok, and now for my vent - before I start, I want to reiterate that I am not mad at DH, I am mad at RA!

Last night was our church's volunteer appreciation party. It was a wonderful black tie optional affair. (Very cool for our church which is a jeans and T's on Sunday kind of place) I had been looking forward to this for weeks. It had been about 18 months since I had not had total responsibility for my kids- and I needed a night out. I spent weeks looking for the perfect dress, and spent way too much on shoes. I looked like a princess, and I really wanted a princess evening!

But DH has serum sickness, and Friday morning had a 104 fever, and slept until 11 am. I told him that he was welcome to stay home and I would go by myself, but he insisted that I had been looking forward to it, and he even put on a tie and sports coat. (My DH wore a suit to his college graduation, and a tux to our wedding - that would be the extent of his dressing up)

So off we go - I drove that kids to our friend's house, dropped them off, drove to the ball room, and happily attended "church prom" (as I had been affectionately calling it for weeks) My DH didn't complain, smiled, and even encouraged me to go dance. I danced for a couple of songs, and then we left - DH was just miserable. So I walked the car, in the rain, to get the car and pick him up at the door, because he could barely walk.

So what is the problem? Everyone would ask. Your DH is amazing for going to this for you. And he is. And I can't tell him how upset I am, because he did truly MORE that he could do for me. And I love him for it.

But here is my vent - WHY? Why did I have to get ready with a 2 yo holding onto my ankle, and why did I have to drive, and why did I have to sit out all of the slow songs at the dance, and why did I not get to 2 step, and why did I have to walk to the car in the rain, and why did I have to sit next to someone at dinner who felt so bad they would really be at home in pj's, why was the only reason I was on my DH arm was because I was holding him up.

I wanted 1 princess night, where the car picked me up, the charming prince was relaxed and witty, where I twirled on the arms of my best friend all night, and where under no circumstance would I subject to pouring rain. I only wanted 1 night and I didn't even get that.

So now it's Saturday morning, I have been up since 6, my kids have thrown moon sand all over the living room, and I have threatened to unplug the TV for a week if they do not stop fighting over what to watch. It's a pretty typical day. But it seems so much harder today because I don't know if I will ever get my 1 princess night.

 

[Schmeck]

I'm so sorry that your anticipation of a fantastic evening didn't turn out how you wanted it to. ((Hugs)) You may never get that day, to be honest. There's just no guarantee. I have a family member who was by her child's side for years - only getting a break when the child was hospitalized, and I mean a 2 hour break while worrying about surgery, etc, she was the 24/7 caregiver. I'm sure she was asking the same questions - and now she can have that time, but it is because her precious child passed away.

 

[alizesmom]

We all ask why. You would be odd if you didn't. You looked forward to a night that not only would be special but would make things "normal" for just a few hours. It didn't happen. RA shoved reality in your face. It's not fair and you have a right to feel upset. That said, I know you will pick up and continue doing what you always do. You are a loving wife. Look at the gift your DH offered by going and try to see your battered prince there. Hugs. Karen

 

[KPeveler]

I think illness is harder on the caregivers than on the people who are actually sick. i have a whole host on chronic illnesses that are slowly eating me alive, causing chronic pain, weakness, and mobility problems. i am 23 and have gone from a distance runner to needing a cane to walk from my door to my car. and i STILL think its harder on the caregivers. we who are sick are keeping busy fighting. you (and this sounds rude, but its true) just have to sit and watch. i think that feeling of helplessness is harder than anything else. i've been on both sides (though on the sick-side more often than the care-giving side).

ya know what, feel free to vent here anytime. i know it is so hard to face another day, but we're all here for you!

 

[minkydog]

Vent away. We totally get it. When you live with someone who has serious chronic illness it changes not only their life, but your life has to change to fit the new normal. And it's hard! I sometimes think "I did not sign up for this." And I don't mean that in a disrespectful way toward my DH. Its just a much harder life than I imagined I would have. So I understand what you're saying. You just wanted to be normal,even a little special for one night. Its too bad it didn't work out that way because you could have probably lived another 2 years on those good feelings.

Here's a hug from someone who is walking in similar shoes. If I was there I could come over and watch the kids for you so you could go to the library by yourself.

 

[MousekeMommy]

I am so sorry that this happened to you! I know what it's like . . . (I often plan out events in my head that "blow up in my face" because of reality). And poor DH--he gave you the best night he had, and he must have been disappointed, too (at least known that you were disappointed). RATS!!!! I know that's not enough . . . been there, done that (repeatedly). Think of the disappointments in life as "earning your wings?!?? Once again, hugs and prayers from me! (Someone in your princess shoes, at times
God bless and good luck!

MousekeMommy

 

[toocherie]

A friend of mine has terminal pancreatic cancer and he and his wife post on a blog. She recently posted (quite courageously I would say) about life as a caregiver . . . . and how hard it is not just for him but for her too. I'm not sure I would have been able to say the things she did for fear of him reading it . . . . but he "knows" what she is going through too. She did mention on the blog that she was seeing a therapist who helps her with her feelings and emotions. If for whatever reason a therapist is not do-able, would the pastor/priest/officiant at your church be available to talk to you? I know that many of them have training in dealing with these types of situations and I am sure they have dealt with caregiver burn-out too.

I'm sorry you didn't get your princess night . . . we all deserve one now and then.

 

[TriMom]

Time and prayer, as always has gotten me through this latest caregiver episode.

I am reading a novel called The Friday Night Knitting Club, and even though it is not a Christian novel, there was a message from God in it for me. I thought I would share it with all of all of my friends who might need an answer to why.

It’s not because you did something bad, it’s not something you deserve….
I believe that sometimes medical issues just happen, they’re not cosmic tests, they are not retribution for all the naughty things you’ve done over a lifetime. It’s not some moral righting of the universe; it’s just something going wonky with the wiring. I think God cries when we are in pain. He cries with us and he supports us. But I also believe He stands back and lets us sort things out for ourselves, let the doctors do their work, lets your body heals itself. And if it doesn’t? Then God welcomes you with open arms. He is really not about the body you know - He is about the soul.

I just found this really comforting, and I hope that it might help something else.

 

[minkydog]

Time and prayer, as always has gotten me through this latest caregiver episode.

I am reading a novel called The Friday Night Knitting Club, and even though it is not a Christian novel, there was a message from God in it for me. I thought I would share it with all of all of my friends who might need an answer to why.

It’s not because you did something bad, it’s not something you deserve….
I believe that sometimes medical issues just happen, they’re not cosmic tests, they are not retribution for all the naughty things you’ve done over a lifetime. It’s not some moral righting of the universe; it’s just something going wonky with the wiring. I think God cries when we are in pain. He cries with us and he supports us. But I also believe He stands back and lets us sort things out for ourselves, let the doctors do their work, lets your body heals itself. And if it doesn’t? Then God welcomes you with open arms. He is really not about the body you know - He is about the soul.

I just found this really comforting, and I hope that it might help something else.

Wow, that's a really great quote. I may have to go get that book. Glad you're feeling better. We all go through this at times. Its the nature of the beast. Don't feel bad about letting off some steam here. Better here than at home.

 

[D L and K's Mom]

Vent, vent , vent. We have all been there.