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Appreciating Our Caregivers
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Christine Miserandino posted:
I just finished watching "Lupus Care," the most recent WebMD Community TV video about lupus from the caregiver's viewpoint. I watched as my mom cried. I listened as a wife shared what it is like from a spouse's perspective, and as a mother expressed fears about her daughter's future with lupus. It felt like a "lupus patient intervention." I felt like I got to see the other side of lupus. I saw what it was like to love and care for someone with lupus.

I know that sometimes we don't always want to face it, but if you have lupus, you're not the only person affected by it. Lupus can also affect everyone in your family and circle of friends. I also realize that I may sometimes take the ripple effect of lupus on others for granted.

My mother and father have helped me many times in my life, and though I always say "thank you" for the things they do for me, I never fully realized the worrying, stress, and fear my lupus diagnosis causes them. Being a part of this video truly showed me the other side of things.

I don't think there are ways to stop our loved ones from worrying -- it is a natural reaction for someone who loves and cares for you. But are there ways for that we can help lessen the worry for others? Yes!

? Be honest. I know that for most of us who have lupus, our instinct is to answer everyone who asks, "How are you feeling?" with the answer, "Fine". But being honest with our caregivers gives them a much better picture of how we truly are feeling. This helps them to not be so shocked if a bad lupus flare happens. It also lets them see and understand distinct differences between good and bad days.

? Keep people in your life "in the loop." Many times, people who have lupus have the instinct to shut the world out by not answering phone calls, emails, or even the front door. Most of the caregivers I spoke with want to help. They want to know what is going on with you. When you withdraw during times of difficulty, it can cause all kinds of "worst case scenario" fears for them. I always thought I was protecting them from hearing my negative lupus news, but what they are imagining and worrying about is by far worse than anything that is actually going on with me.

? Be grateful. So many people in the world do not have caregivers. We all need to remember that these people love us. Try to be patient with your mother, friend, spouse, or partner when they ask you for the hundredth time if you have taken your medicine. Try to be understanding when they ask you a billion questions so they can gain a better understanding of your lupus. Have patience. Say, "thank you." And be grateful.

Boy, did I learn a lot from that experience taping that video! It has certainly changed how I appreciate and interact with the caregivers in my life!

Did you see the "Lupus Care" video ? Did anything hit home for you?
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Christine Miserandino responded:
Hi!

I always said that someone should make a greeting card line for people who are chronically ill or their caregivers since there unfortunatly are so many of us in the world. Well, someone did it! I was in the store the other day and saw that Hallmark made a perfect card that had a picture of a girl hugging this huge boulder of a rock The inside said "Thanks for being my rock". So simple. It was the perfect card for my parents to let them know I appreciated the help they have been giving me through a tough personal time lately.

Sometimes a little note of thanks is all it takes.

Love and Spoons,
Christine
 
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An_240794 replied to Christine Miserandino's response:
Thank you for this suggestion as well as the video clips. I found them very helpful & even managed to get my husband to view them with me. I didn't think I needed a support group, other than my family and friends, but through time & dealing with this illness, I am beginning to think that I do.
 
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An_240869 replied to Christine Miserandino's response:
this is totally different.. I want to say thank you for your postings....Today I found out that my career in the mil may end due to Lupis....Not because of my inability to perform, but due to a suggestion of a Nurse Practioner to Med Board me....I was thinking on how I could just take my life and end this craziness....but after watching two of your episodes....I'm still thinking of how I can take my life, but I'm thinking on how I can turn my worries around to strengths and conquer. I truely believe if it wasn't for your episodes I wouldn't be attempting to accept my situation or coming situation and move ahead.....so thanks
 
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Caprice_WebMD_Staff replied to An_240869's response:
Dear An_240869 and welcome to WebMD,

I'm sorry for your need to be here but glad you found us.

When a chronic illness really impacts our lives it can be so very difficult and I'm glad that you're realizing that it is possible to turn things around and move away from the suicidal thoughts. Keep talking here on this board if it helps at all.

And also talk with your doctor and others, creating a support team around yourself.

And if you ever need help keeping yourself safe, please call a crisis line .

(((softhugs)))
We must let go of the life we have planned, so as to accept the one that is waiting for us.
~Joseph Campbell
 
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lupylisa44 replied to An_240869's response:
Lupus is a disease that has flares and remissions. I have had lupus for nearly 28 years and I can tell you from personal experience that it will get better! No job or career is worth taking your life! It may be really hard, but it is possible to find the positives even in negative situations. For example, My apartment burned down and I lost everything I owned, but it turned out to be a great lesson that taught me that material things are not that important

I have nearly died several times from lupus, I can no longer work because of lupus Lupus has taken a lot of things from me, but it has also given me a lot of good things and taught me that I am much stronger than I could have ever imagined. I have had a very fulfilling, wonderful life!

Please hang in there! We are here for you if you need us!

Lupylisa
With love, with patience and with faith, we'll make our way.


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