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Discussion Starter · #1 ·
First let me say that my family is a bit disfunctional, who's isn't?, but mine is really sort of strange in some ways. But I do have my sister Julie, who is a registered nurse, and who is learning what she can about lupus and is interested in being a support.:rotfl: My mom and I have nothing in common unless it would be the fact that we continually misunderstand each other. Mom was putting me down about the weight gain and breathlessness, from prednisone--that is until she heard a woman talking to me at the pharmacy about how bad her weight gain was. :worried: Mom doesn't take what I have to say as true, she has to hear it from somewhere else, or someone else before she believes it.:mad: A couple of weeks ago we went to the mall to the bookstore and all she could do was complain about how many times I had to sit down, and how much I weighed, and how out of breath I was.:sad:She kept telling me that I needed to get out and start excercising and quit just laying around.:worried: Well, if I could breathe while I exercised it would be helpful. ;) Well, finally the cardiologist explained that the prednisone was causing all the difficulties, to which she said I told you so! She wouldn't listen to me when I brought that up, she just wants me off of that medicine. I would love to be off of it, and am beginning to taper off the prednisone starting today, my rheumatologist has instructed me to do so. Hopefully it will work and I will feel a bit better.:fingers: I try to be honest and open with her when it comes to how her comments come across and that seems to help a bit. Last night she was sounding like she was accusing me of eating too much and gaining the weight just from being lazy, I said she sounded as if she was accusing me and she said, oh she didn't mean to sound that way, only that she was concerned about what the medicine was doing to me. I am beginning to learn to speak up when I feel she is judging me or getting the wrong idea, that way things get all straightened out faster than if I sat around and stewed about it for hours or even days. Karly COMMUNICATION!:wink2:
 

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Getting it

;) Hi Karly, it's nice to meet you. I am sorry you are having difficulty with your mom. Mine is pretty much the same way. When I was first dx, my mom thought that it wasn't really a disease and it was my fault for negative thinking until the doc told her to lay off on the judgements and support me. I have had this disease for 22 years with good remissions in and between my flares. I have a strong faith and prayer helps me when I am really struggling to make sense of things. We went to church growing up and my mom had the pastor lay hands on me when I was 18 and told me I was healed. At that time, the meds were really kicking in and I went into remission for a while and while I strongly believe in faith, I also know that it was a combination of things and she didn't. Even now, all of these years later, she believes I was healed and shouldn't be flaring. And of course, if the world doesn't revolve around her, she doesn't understand the process, no matter what it may be. I am very glad you have a sister that supports you and you will have a lot of support and insight from this site. The difficulties you are having with the breathing, meds and symptoms are related to the disease process that takes place everyday in our bodies. I pray that you will continue to seek support and follow your doctors' instructions. I am also sending a hug (((((KARLA))))) for support and strength to hold you during this trying time. Remember, you know your body and your feelings. You also don't have to justify them to any one person as this will sometimes cause more stress and stress isn't good for you. Please know you are thought of often as others on this site, you all are in my thoughts and prayers. Take care and don't hesitate to vent when you need to and update us on the positives so we can reinforce you in every aspect.
Love
Jules:) :) :)
 

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Discussion Starter · #4 ·
Thank you so much

:wink2: I was just writing to a friend that I could use a great big hug, and you sent me one.:hug: Here's one right back at you. What made me smile is your name, my sister's name is Julie and has often used Jules with her friends. It is easier for her to understand because she is a registered nurse and she has made an effort to learnmore about lupus, so at least I have that and some friends and of course all of you here, I am truly grateful for each and every one of you even if you are a silent reader of my posts, each one of you helps me feel heard and understood. Much love, Karly:wink2:
 

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I know just how you feel, as i have the same not only with my mum but from my dad, brother,ex mother in law and now ex partner.
All have the same to say, "if you got out more you´d lose the weight, and feel a whole better and you´d have more energy.You know you sleep way to much and its no wonder you can´t sleep at night."
I feel like saying WELL HELLO PEOPLE, DON´T YOU THINK I KNOW THAT.
Ido stand up to them sometimes, but they don´t seem to listen and i sometimes don´t have the energy to repeat myself, so i just stand/sit there and just say yes your right,yes i will do that, WHEN I HAVE THE ENERGY (which at the moment i have none :( ), but when i do have the energy something else always crops up, so i never get around to it anyway lol.Funnily the only ones that seem to understand (and they no nothing about lupus or the meds im on) are my friends.They enquire and symphathise about how im doing, they never tell me im fat or should get out more, in fact they think its great that im up and awake at nights, just so they can ring me and catch up, as they are working during the day. :)

1 even taught me what to say to others, when they critize that im fat :
just tell them "I THINK IM ANOREXIC, BECAUSE OTHER PEOPLE THINK IM FAT "
that seems to stop them dead in their tracts, and makes them think before saying anything else to me.
ok, i think thats it, i have nothing more to say,
oh just this, i know how you feel, and always will, so take care and TRY TO GET OUT MORE BECAUSE YOU´LL FEEL A WHOLE LOT BETTER LOL.

best wishes nicky xxx
 

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Hi Karly :wavey:

First of all i wish you good luck :luck: with the pred taper and hope that you can manage on a lower dose.

I was just thinking about the part where you said that your mom doesn't believe anything you say and that she as to hear it from someone or somewhere else, have you thought about printing off some info about lupus and also the pred, this may help her to understand what you are going thru and also understand the side effects of pred.

Will your sister have a chat with your mom about all this, with her been a nurse, maybe your mom will listen to her.

I will keep my fingers crossed :fingers: for you and hope you can resolve this situation with your mom.

Take care :hug: Jo :hug:
 

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Discussion Starter · #7 ·
Tried

Hey, Bugsy I love the rabbit on your signature, is he/she a pet? I LOVE rabbits and had one for seven years.
Ok, back to my mom reading anything about lupus, she will not read stuff given to her about anything. When I had some psychiatric diagnoses she refused to read ANYTHING even given to her by the doctor.
Prednisone she knows a little bit about, but only because my aunt died from complications from a relatively rare autoimmune disease, and she was on prednisone, but all mom knows about it is the moon face look prednisone gives people.
What my mom does not acknowledge or learn about, in her mind it is not happening. So I go through this basically with all of your help, my sister's help and some good friend's help all of who are willing to listen learn and understand. My dad is the same as my mom, if it is painful they don't want to know about it. Neither of my parents ever call or come over to see how I am despite the fact I live only minutes away from both of them. It makes me sad and sometimes very lonely. Karly
 
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