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Getting kicked when I am down

477 Views 18 Replies 16 Participants Last post by  cad
This winter has not been kind to me. After pneumonia, pleuritis and super high doses of steroids, I was finally able to get down to 10 mg of pred and feel OK...even though I have like 4 chins hanging off my face was looking forward to getting back to normal.

I wound up back in the emergency room for the 3rd time in a month this weekend...woke up at 3am in horrible chest pain and difficulty breathing so I thought it was my lungs again - but my chest xray looked ok...however all the muscles and cartilage surrounding my ribs and lungs are inflamed causing alot of pressure - Now have costrochondritis...the pain is unreal, and I have a relatively good tolerance for pain.

Getting up with the baby in the middle of the night is awful..I cant even get out of bed without screaming in pain..this is truly awful - I never knew it could hurt like this - My house is an absolute mess, and I feel so guilty when my husband comes home from work and has to take care of everything..I know he is tired himself. Not sure what is worse, the guilt or the pain LOL.

Im not even sure which one of my doctors I am supposed to call for this? My rheumatologist? Pulmonologist?

I just needed a space to one understands what it feels like to always be sick..they just look at you funny because they dont know what to say I guess.
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Hi there and ((((((((hugs)))))))),

You poor thing, that pain sounds dreadful and quite unbearable. I wouldn't care too much about who I am "supposed" to call - I'd call them all until I got results. Maybe getting a referral to a pain management doctor might be worthwhile, just shooting in the dark here...

It's never easy getting up in the night, even at the best of times but with that pain must be even harder. You must also be totally exhausted with trying to cope with it and too little sleep. You need to try and do something about this.

As for the house. If you can afford to get in a little extra outside help then I would strongly recommend doing so. That's what we did when I honestly couldn't do a thing around the house. Even though things are a bit better now, we still have that help and it means that the energy I have can be chanelled into a little work rather than cleaning. If you can't afford to do that, and I understand that many people can't, then you just have to learn to "ignore" it. You have to try and condition yourelf not to feel guilty. You are not responsible for having this disease and its consequences. I'm sure that hubby feels just as bad having to watch hopelessly without being able to relieve your pain.

I'm truly sorry that I don't have any more "helpful" suggestions,

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you have so much going on right now i'm not surprised you need to vent. It sounds like you are going through an awful time and I just want to offer you lots of (((((hugs))))). I know its hard but please try not to worry about the house work, if you could get someone in to help that would be ideal but don't make your health worse worrying about it. As for who to call, like Katharine says call everyone and keep calling till you get some help.
I hope you get some relief soon.

Elle x
Dear Sharon

Im very sorry to hear you have had such a rough time and are in so much pain. :sad: How hard it must be for you trying to look after the little one :sad:

Katharines idea of getting in some help sounds great if you can afford it. Its amazing what someone can do in the space of a few hours per week to keep things ticking over. I have someone who comes in for three hours every fortnight and its enough to keep the house going plus I get the ironing done. Its so worth it that I would sacrifice other things to keep it going.

Basically she washes the floors, tidies up the kitchen area (so it looks like a new house:)), tidies up here and there, makes the beds (and changes the duvet covers which I cant do myself) and does the ironing. The rest I can manage but this small bit of help means the world to me.

I hope one of your doctors can help you and that the pain recedes soon. You might need to go up on the steroids again. I recall getting a severe bout of inflammation in the chest and screaming in pain trying to lift myself off the bed. Its horrible :sad:

Do you have anyone to help with the baby? I cant imagine trying to lift and mind a baby while I was in so much pain.

Please let us know how you are doing if you get the chance
Much love
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Hello Sharonna,
What a bad time for this to happen. Costo is very painful unfortunately.
Just cope with the baby and the housework will wait. I hope you can get some help, where I live it is hard to find people even if you pay well and treat them like royalty!
x Lola
Dear Sharon,

Bless your heart. Taking care of a baby and having that chest wonder you are so down. I've had that chest pain that awoke me from sleep and I couldn't take a deep breath or hardly move without sharp pain. My doctor had me on 15mg prednisone daily for a week plus pain meds for those times. I'm not sure if you are breastfeeding, so those options might be limited. If not, get whatever drugs you can to help with the pain so that you can function.

And...forget the housecleaning...get help or try to put it aside until you feel better.

How is your husband about this? Is he understanding? It might help to say that you realize things could be better, but that you are doing all you can right now and once things get better, things will improve around the house. If he asks what he can do to help, give him a few jobs! It might help him feel better as it's possible he feels terrible that he cannot do anything about your pain.

Above all, get help from your doctor to stop the pain so you can function. Once you feel better, all these things will feel less overwhelming.

Hang in there...
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Thanks everyone for the advice..and the (((hugs)))!!!

Katherine, you are so right about "ignoring" the mess...and how my husband is besides himelf to see me sick like this..personally I think he's afraid I'm going to bite the dust if thats even He is very concerned that the lupus may be progressing.

Joan, they did raise me back up to 40mg pred..still better than the 60 I was on, but Im also on Quinacrine so hopefully the two together will knock this all out for good.

My husband wants his mother to come and stay with us, to alleviate some strain on us both (him really) but I know Im being stubborn to say NO!! but we are so different in the way we do things she stresses me out to the point where I cry sometimes!!! I love her to death, but we are definitely opposites and it will make me feel worse to have her here so I am telling my hubby I feel alot better than I do to avoid that.
Ah yes Sharon - I can understand you not wanting to have Mum-in-law around. That kind of stress will definitely make things worse for you. It must be hard though pretending you are doing better than you are. :hugbetter: You dont want to hurt anyones feelings I'm sure.

Lets hope tomorrow and each day afterwards finds you getting better and better.

Much love
((((((((((sharon)))))))))))) so sorry your having such a bad time,. the costro is terrible i know, and the fact you have little ones to see to must be realy hard, its bad enough just having me and hubby, and i know how you feel about the guilt too,

But its so easy for us to tell you this and that its hard when you have to aply it to your self, can you not get care over there?? when i did home care i use to have to go to a lady with a little one and a baby as she had RA, and couldnt see to the baby like bath , so we use to get 1hr everyday mon to frid to help with kids, as we were there for 1 hr we use to sdo other jobs too,so she didnt have anything to do afdter we had gone,

didnt ever think it would be me needing the help and loosing my lovely job but there you go lupus hey,

So could you have a social worker and get them things done for you, just a thought, one never knows what they are entitled to till they find out
i really hope you can, good luck Lin xxxxxxxxxx
I am so sorry ((((hugs)))), hope that helps. I can tell you we all know what it feels like to looked at and asked and what is wrong with you?lol. Don't let it get to you, we understand what you are going through. It may not be the same symptoms but many of us have been where you are. You are right the guilt is worse, only because it is always on your mind. I am hoping that you feel better soon and wish I could say or do something to help.
I think you are wise not to let your mother in law move in. It's a stage where you need to set boundaries regarding the baby etc and you don't want to swap one set of problems for another.You just need a little support and I also agree , get some help just do do the hoovering, etc. It is amazing what someone can do in the space of 2 hrs. Phone round and get some quotes from cleaning agencies, they differ greatly in price.

Hope things settle down for you xx
So sorry to hear it is happening once again :hug: This constant cycle has to be wearing on you.

Have you considered using a brace or wrap to help restrict your movement? During my worst bout I found it helped remind me to keep the upper body stiff.

Take care,
So sorry to hear you are having such a hard time. I have had that costo and it was not fun, and my children are older. I hope that you start to feel better soon and in the meantime take care of yourself.

My heart goes out to you as you have really had a lot to deal with.

As for the housework and the dust and will be there tomorrow. You need to try and not worry about this right now. As women, we put a lot of expectations on ourselves and that can be hard.

Work on getting better first then worry about the house. You have bigger fish to fry right now.:wink2:
My pulmonologist sent me to the cardiologist today..I am glad to know there is no inflammation around my heart - Just looks like costro at this point, and as painful as it is I at least know it will pass.

My husband is totally against having any outside help, he wants to tackle everything on his own, but I have decided to at least hire an outside laundry service for now to pick up that task...2 boys under 3 sure make alot of laundry!!! (But I'm not tellin him LOL;))

Thanks again for all your kind words!

I am so sorry to read about your problems. Plus you are taking care of 2 little ones under the age of 3. :eek: The pain has to be so rough on you.:hug:

As far as the house goes, don't worry about it. If anyone comes and says something hand them a dust cloth and tell them to get busy.:bigsmile: The most important thing is to take care of you and your family.

You are in my prayers.
Hi there :)

Good move on getting help with the laundry. I can't imagine having costro and having to look after little ones ((((((((Sharon))))))))))

I hope it passes soon and that in the meantime you can get some relief from the pain. I know my anti-inflamms dulled it a bit but that's all. It's horrible pain but a relief for you to know your heart is ok.

lots of love
Hi Sharon,

I want to offer my support for you, during this most difficult time.

You are a strong person, but have limits. Please try..not to worry about the things that don't matter, in the end.

You and your family's immediate needs, are all that matter.

I hope you heal fast (((Sharon))). I hope your pain eases soon.

I agree..that a pain specialist may be in order, at this point.

Bless you, Sharon.

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Hi Sharon,
I really empathise you poor thing. I too a lot of unflamation around my chest area and it s awful especially with a family to take care of.

Just try to focus and the survival stuff and try to rest if and when you can. When the baby is having a nap maybe try putting a movie on for your other son and putting your feet u[ for a bit. Easier said than done I know!!

But don't feel guilty.

I definately think you should ask for some pain relief if you don't have any already it will definately help take the edge off atleast.

I hope this awful episode starts to get better for you soon and n the meantime don't give your self a tough time for not doing everything.

Take Care

Cassie :)
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