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DonnaM

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 #1 
Not so many caregivers around, huh?

In Feb of this year, my daughter (33) suddenly ended up in hospital for 2 weeks. Long story short, pretty much every major organ was under attack with fluid build up, extremely low blood counts, etc. Scariest thing I've ever experienced since neither of my kids have ever really been sick enough that we even took them to the ER. Since March, she has seen more specialists than you can shake a stick at and they all want blood! Everything seems to be back to normal levels now except anxiety. We have plenty of that.
 
Rheumatologist put her on high doses of steroids for all of the fluid build up, etc. which she is now off of, and now she is on plaquinel and synthroid, and way more vitamins than she's ever taken before. In the end we're told that she had a 'connective tissue disorder' which was then narrowed down to possibly lupus, however 8 months later they have still not given us a definite diagnosis.

Is this 'no definite diagnosis' thing normal? I feel like I need them to label something so I know what to research. In my head I've decided it's lupus, which brought me here...

So. Any suggestions for online resources, helpful hints on how to deal. I don't understand the whole flare up thing and how you know a flare up. Everything is new. I think we're still sorting out what's what. For instance, she gets UTI's more than she should but they don't present with the normal burning pee symptoms, they just go straight to debilitating pain in the gut ER visits. The roommate has the flu right now and I freak out because "OMGimmunesystem". Pretty much hosed the place down with Lysol and Clorox. Cat is not happy about that then again I think cat is still PO'd that her person was in the hospital for 2 weeks instead of at home fulfilling her duty as official cat furniture. LOL!

I know that everyone is different but are there typical signs to watch for? Anything dietary that helps?

Thanks in advance and nice to meet you all!
DeBartolo

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 #2 
Quote:
Originally Posted by DonnaM
Not so many caregivers around, huh?

this site is filled w/ caregivers - we're quite busy taking care of ourselves, mentally & physically, and it's not easy.

In Feb of this year, my daughter (33) suddenly ended up in hospital for 2 weeks. Long story short, pretty much every major organ was under attack with fluid build up, extremely low blood counts, etc. Scariest thing I've ever experienced since neither of my kids have ever really been sick enough that we even took them to the ER. Since March, she has seen more specialists than you can shake a stick at and they all want blood! Everything seems to be back to normal levels now except anxiety. We have plenty of that.
 
Rheumatologist put her on high doses of steroids for all of the fluid build up, etc. which she is now off of, and now she is on plaquinel and synthroid, and way more vitamins than she's ever taken before. In the end we're told that she had a 'connective tissue disorder' which was then narrowed down to possibly lupus, however 8 months later they have still not given us a definite diagnosis.

Is this 'no definite diagnosis' thing normal?

very much so...

I feel like I need them to label something so I know what to research.

get over the feeling ... spend your time researching any & everything that you can use to combat inflammation - like taking 6 grams of a quality salmon oil daily, or an alt treatment called UVA1 phototherapy (if you don't mind building your own medical device)

In my head I've decided it's lupus, which brought me here...

So. Any suggestions for online resources, helpful hints on how to deal. I don't understand the whole flare up thing and how you know a flare up.

the “official” definition of a flare is: “a measurable increase in disease activity in one or more organ systems involving new or worse clinical signs and symptoms and/or lab measurements. It must be considered clinically significant by the assessor and usually there would be at least consideration of a change or an increase in treatment.”

but in my mind, a practical definition is - whenever you feel worse than you usually do.


Everything is new. I think we're still sorting out what's what. For instance, she gets UTI's more than she should but they don't present with the normal burning pee symptoms, they just go straight to debilitating pain in the gut ER visits. The roommate has the flu right now and I freak out because "OMGimmunesystem".

have her start taking zink if she catches a virus

Pretty much hosed the place down with Lysol and Clorox. Cat is not happy about that then again I think cat is still PO'd that her person was in the hospital for 2 weeks instead of at home fulfilling her duty as official cat furniture. LOL!

I know that everyone is different but are there typical signs to watch for?

just google it

Anything dietary that helps?

sticking to an anti-inflammatory diet, like the mediterranean diet, is wise.


Thanks in advance and nice to meet you all!

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Cakelady

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 #3 
Hi there I think Anthony did an excellent job on answering your questions.

Most of the "caregivers" so to speak is ourselves. How ever some of us most of us do have family of some sort. My husband does his best to make sure I am comfortable. He is the quite type but if I have a seizure he's there. Everyone is different.

Has for the UTI's. When the pain hits instead of heading to the ER for the long wait have on hand AZO pills which is an over the counter med. take it and start drinking cranberry juice. It will turn your pee a funny color but it will take the pain away till you can get to the doctors and get a test done. I have found that I can not drink anything with acid or a lot of acid. If I do I either get a UTI or kidney infections. I drink mainly cranberry juice crangrape or cran something.

Good luck

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Robinj

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 #4 
Welcome! And please encourage your daughter to join or at least read through some threads. Sometimes we go off topic, but there is a lot of great info here from a variety of people and issues.
[wave]

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
DonnaM

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 #5 
I think that my initial statement about not so many caretakers was taken the wrong way. My comment was because the only thread that was in this board was about self care which, to me, does not fit the message board category of 'caregivers of people with lupus'... I understand that many of you take care of yourselves with little to no help from other but I was actually looking for other people to talk to who are in the same situation as me, as a person trying to help someone cope with all that there is to learn and watch for when dealing with this disease. In my situation, I think that I see things in my daughters behavior that she just doesn't see. I have to nudge her to pay more attention to what her body tries to tell her. She's never been sick with anything more than a bad cold and I think she's only just now starting to acknowledge that this is something that she's going to be dealing with for the rest of her life. I like to equate it with when she started college. Through her entire school life up to that point she never had to struggle with homework or studying for tests but then all of a sudden she had to start actually studying and she really didn't know how. It was a huge adjustment on her part and it took a while for her to get there. I think she's probably doing the same thing now, going from pretty much healthy all the time and not having to pay attention to anything to now, trying to decipher the little signs that her body gives her.

I would love for her to get on the message boards and read what other people have to say, but I think she's still on the denial side of the wall right now. Her gp just put her on Zoloft for her anxiety, doc thinks that her back pain is from stress/social anxiety, maybe when that kicks in...

As for the UTIs, yeah... trying to get this girl to drink any type of fruit juice... she wouldn't even drink juice when she was a baby. She'll eat fruit all day long but seriously... no one wants to eat cranberries. I talked to the doc and we do have her taking cranberry supplements though.  I hope that they help stop the reoccurring UTIs. When she was in the hospital we found out that she only has one fully functioning kidney so I get freaked out a lot with these UTIs and all the pain she gets from them. Constantly worried about not catching them before they become kidney infections, especially since she doesn't get the usual early warning symptoms. Also, it turns out that the UTIs that she's been getting are very resistant to the usual antibiotics so *bonus* points.

Also, I apologize in advance. I was raised in a family that fought fear, stress, and worry with humor and sarcasm. Just tell me when I'm inappropriate. Also, I have an addiction to the ellipsis. just ignore it and pretend there's only ONE period instead of the 3. It's quite automatic and I don't even know I'm doing it most of the time. *shrug*
DeBartolo

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 #6 
Quote:
Originally Posted by DonnaM

 I was raised in a family that fought fear, stress, and worry with humor and sarcasm.



in that case, you'll fit right in Smiley



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Robinj

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 #7 
I am a lifelong member of the dot-dot-dot club myself...
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
mikesmom

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 #8 
I know this is an old post but I'm at my wits end.  My son, who is 24, was diagnosed with lupus when he was 19 because of joint pain.  Its weird because it came about after his dad died. It started with joint pain for several years but now its progressed to organ involement.  I don't know where else to turn for support.  If anyone wants to talk I could use an ear
Aussie

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 #9 
Gday mikesmom,
Lupus is a hard disease to deal with physically & emotionally, particularly when it is one of your own. You will find much support as there are other Mums/Dads here going through the same nightmare as you. I'm sure they will jump in once they find your post.
Some experts say that SLE can be triggered by stress, though I am not sure of that as there would be many lupus sufferers if that was the case. I will say though, that SLE can flare due to stress but that's just my opinion.
May I ask what medication your son is on & the type of organ involvement he now has?
I'm sorry you are feeling so distressed & wish there was an easy solution for you both.

Just remember you are not alone in this fight & there will always be someone here for you in the good times & the bad times.

Hang in there

Cheers....

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