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CHRISTINE MISERANDINOHey, come on in. Nice to meet you. I'm so glad you came over. Let's move over here. Oh, wow, look who's here. We're so appreciative as lupus patients of our caregivers. But I know sometimes we want to know how can we help you. So tell us what is it like on the other side of lupus.
CYNTHIA CALHOUNI think, for me, the I'm OK all the time when you're really not OK is the hard part. If you tell me you're OK, I want to believe that you're OK. And then if I come back and you're curled up, you were never OK when I left you.
DEBBIE COTTONIt does confuse us. I think if we look at you and we feel like you need to rest, then you need to rest. I think as parents, as a wife, we can look at you and tell when you've gone far enough and you need to take a break. I know my daughter wants to be stubborn. And she wants to be like everybody else.
CHRISTINE MISERANDINOI mean, I'm sure, mom, I don't do that to you at all.
JANET MISERANDINOWell, I'm going to rat you out. Christine has a tendency to either be fine and wonderful and calling me up and giving me updates about Olivia or when she's really at her worst, she kind of shuts down and doesn't even answer the phone. Then I get angry because then I think something's really wrong. It makes it worse.
CYNTHIA CALHOUNAnd not knowing is very, very hard.
DEBBIE COTTONYeah. I think it's a little different for me than it is for either of you. I know you live with your husband, of course. And you live in the same town with Christine. My daughter has been living away from home for almost a year now. So telephone is our connection. And if she doesn't answer the phone or she doesn't answer my text--
DEBBIE COTTON--I panic.
CHRISTINE MISERANDINOAnd I'm sure there's plenty of parents out there that don't live close to their child who might be living with lupus. And that connection is really important.
DEBBIE COTTONVery, very important.
JANET MISERANDINOWe, as caregivers, need our support group. We need caregivers. And I have a close girlfriends for years who will call and say, how's Christine? And other people stop asking because it is going on so long.
CYNTHIA CALHOUNExactly. Because most people don't understand this is lifelong. It's not like there's a healing process and it's over and we're back to normal. Well, this is normal. This is what we live with.
DEBBIE COTTONAnd when you're working and you do work, you do have to manage your time as best you can because your sick daughter might need you. Times during the year, I'll be sick myself. And I won't even take a day off.
CYNTHIA CALHOUNAnd we still go, right.
DEBBIE COTTONBecause I know that my days need to be saved up because Robin might need me.
CHRISTINE MISERANDINOI'm afraid to even look this way because you guys are identifying. I'm, like, scared right now because I know--
JANET MISERANDINOI feel that vibe, exactly. I never would take sick days. I would go in dragging sick, coughing, sneezing, it's terrible, I know. But I would try to save those days because what if she was going into the hospital?
CYNTHIA CALHOUNThere's no such thing as taking off. But you learn to manage your time for that. And even with family, well, can you guys take off for this? I really can't. I need to save my vacation time for if he goes in the hospital. Because when Eric go to the hospital, Cynthia goes to the hospital.
CHRISTINE MISERANDINOThis really is lupus intervention. But I'm guilty of all these things that you're saying. And it's so nice to talk to you guys because I'm kind of getting the perspective from the other side.
CYNTHIA CALHOUNIt's hard.
DEBBIE COTTONNot just your mom's, huh?
CHRISTINE MISERANDINONot just my mom. I thought she was unique, but apparently she isn't.
JANET MISERANDINOIt's like the worst thing a parent can go through. And I'm sure a spouse. But to see your child sick, you'd rather be sick yourself. It's so sad. It's so upsetting. And just like I believe the lupus patient is prone to depression--
CYNTHIA CALHOUNSo are the caregivers.
JANET MISERANDINOI think so are the caregivers because I have been sad many, many times.
CYNTHIA CALHOUNAnd we pretend to be OK.
JANET MISERANDINOAnd we pretend to be OK too, just like you pretend that you're OK. And we all shouldn't, but we do.
CYNTHIA CALHOUNIt's a hurting feeling. I mean, I have my cry moments in the shower. I have my cry moments when I go and take me a bath. You find time for those cry moments because in front of that particular person, you want to be the strongest you can be. But on the inside, you're dying. You're ripped apart. But you put on a happy face and you smile. And you say, we can get through this together. Then you go in the bathroom and you ball.
DEBBIE COTTONYeah, I think we have to be a little stronger actually than the patient to keep from putting that kind of pressure. I know Robin couldn't handle it if she thought that I was--
CYNTHIA CALHOUNAnd my husband definitely couldn't handle it. I mean, the man of the house? Come on. I can't lose it in front of him when he's sick. It's not going to work.
CHRISTINE MISERANDINOWell, I think you all need to exchange phone numbers because you need your own significant other support group.
CYNTHIA CALHOUNYeah, you do.
JANET MISERANDINOAnd there are significant other support groups. I know there are some where we live. So I guess you have to look into it.
CHRISTINE MISERANDINOAnd mom, I'm getting you their numbers.
CHRISTINE MISERANDINOOK. Sounds good.
JANET MISERANDINOGood sounds.
DEBBIE COTTONSounds great.
CYNTHIA CALHOUNWe learn to compromise a lot because you learn to live with the lupus, just like you all learned to live with lupus.
CHRISTINE MISERANDINOSo, wait, so I think I've learned that maybe it is our lupus.
CYNTHIA CALHOUNYes, absolutely.
JANET MISERANDINOAnd that you should always call your mother.
CYNTHIA CALHOUN: Yes, absolutely, yes.
CHRISTINE MISERANDINOSo I've learned these things.