Life with lupus is challenging. You have your good days, bad days and the dreaded awful days. I have a three year old son whose life revolves around playing with trains so on my good days with lupus, I am super mom! We are in full play mode running aroumd the house, having a great time. On my bad days I can't do much running around but I am still able to fake it and smile through the achy joints. My awful days are when I can barely get up out of bed. On those days I completely shut down mentally and physically. I don't want to get into the habit of telling my son, "Mommy's sick." I want to know from you, how did you tell your child about lupus?
first comment!
ReplyDeleteYou are really not first Sheth..lol..cause I tried to post last night but it did not go through..with that being said..To Aitya, you know I've had lupus for many years and right now there is nothing to tell your son because he is not at the age to understand. My daughter has only really known what I have for a year and a half now because she started to question why I take medication everyday and sometimes not feel well. It wasn't an easy conversation..she cried..I cried..and we spent the day together but even at 11 she doesn't fully understand, so for now just let your son be free of it and the time will come when you have to explain.
ReplyDeleteAitya and Yonni,
ReplyDeleteFirst I'd like to say that I admire your determination, strength and desire to live full, productive lives in spite of this disease. I agree with Yonni, your son is still too young to understand about his mommy's lupus and at whatever age, it surely won't be an easy conversation. However, mommy will know when it is time to start down that path and he will be one of your biggest supporters when going through those "difficult" days.
I say this based on my own experiences with my disease and my daughter. She was 10 when I learned of my diabetes and I endured many hospital stays. Then and now, she is my rock and probably can tell you more about this disease than I. God will prepare you for that conversation and anything else that may come in your path. :)
Tia and Yonni -
ReplyDeleteI am so proud of you for the way you both handle your disease. I often wonder "Why was I spared of this disease and you both have it?" The only thing I could come up with is God wants me to be strong for you and carry you when you have flare ups and difficult days. So that's my purpose in this journey. I love you both and hope this blog will help you and others. As far as my nephew, let him be a kid as long as long as he can without adult worrys. It will all work out in time.. Love you both, your sister. Tamika
Tia...Blogs are excellent ways to express your feelings, vent, educate, and spread awareness all at the same time...It is wonderful that you are sharing with others...
ReplyDeleteIt is amazing how many people I have met or had a conversation with and they know someone that has been touched by Lupus...There are also many more that are not aware of it at all...
As far as telling the little man...you will know the time to fully explain, but in the meantime be AWARE that children are always AWARE...There are many people that have been down this path that will have great advice to share with you, Tia, that we can all learn from as well...
I can't wait to help others with their quality of life...I will be able to use the knowledge and understanding I have gained from those close to me with Lupus (as well as other chronic illnesses) to help others maintain healthier, happier lifestyles.
I love you, sis.
Hi, Tia! I agree with Abbi -- I'm happy that you've started this blog. Although many people know of lupus, there are still many who don't. Expressing how you feel, educating, spreading awareness - it's all key in helping others whether they suffer from this illness or know someone who does.
ReplyDeleteThanks for this. I know you will know the right time to share the details of this with your son, and everything will be okay. Stay faithful, God will always work it out. Love you!
Tia,
ReplyDeleteI marvel at the fortitude that you exhibit as you live the lupus experience. You are continuously researching this topic, gathering all that you can from printed materials, as well as, going into your own person to find methods that seem to provide the best results for you and just as important, your willingness to want to share with others.
My awareness of Lupus was the result of you getting our family involved in the Walks for Lupus in support of your sister. I must admit, even now, being so closely connected to a person
(you) with the illness, I have not read a lot on the subject as I am observing and learning sooo.... much from you about its affects.
In response to your question, I believe that JMJ (your son), is already aware of your illness, although not by an official name. He is very much aware of your down days and is very in tune to those in his presence that are not feeling well. I believe that one day, he will come to you and ask about this (thing) that impacts you at times and I am confident that the words will be there for you to have the necessary conversation with him. I don't feel that it will be a planned time, but I do feel that whenever it happens, it will be the right time.
For now, Ms. Tia, he is having the healthy experience of living the life of a (bossy) 3 year old. ENJOY IT!
You are a special part of my life and I am thankful to be able to be on this journey with you.
I BELIEVE IN MIRACLES!!
Gran_AYM
Excellent feedback so far. I hope to see weekly updates on this blog! New and updated content is essential to build readership. Hopefully, some other people who have lupus or know someone with it will find the blog and be able to learn something or contribute something.
ReplyDeleteThank you for all of your words of wisdom and support. My family and I appreciate the feedback from all of you.
ReplyDeleteAitya, thank you for sharing your experience, thoughts and feelings living with lupus. I must admit I have been clueless, but I look forward to doing some research and sharing as I learn. As far as JJ, he's a trooper. Cherish all the days you share with him and SY. We look forward to seeing you all again this summer. In the meantime, I will compile some meatless recipes and send them to you.
ReplyDeleteCheck out these books if you haven't done so already: Eat right for your type; cook right for your type; Fatigue (all by Dr. Peter J. D'Adamo) and Health & Healing for African-Americans (straight talk & tips from more than 150 black doctors on our top health concerns-edited by Sheree Crute).
Lastly, research napol cactus juice when you get a chance. A friend of mine drinks it and she swears by it for fatigue, chronic inflamation in her body and joint problems. The website is www.KaresCactusJuice.com
Aitya, Thanks for creating this blog. I really wish I had something like this when I was living this experience. When my mom was diagnosed with Lupus I was about 31. It doesn't get easier to understand with age. So I agree with the previous comments to allow your son to be a child and live life worry free. There will come that time when he begins to ask questions. When he does just explain in a way he'll understand and then he still may not.
ReplyDeleteAs stated, I was grown. I was angry and confused. Then I had to try and find ways to comfort my mom without her seeing my anger. My anger was never directed towards her but I was angry because she was suffering. Nothing feels worst when you are caring for your loved one and it gets to a point when there is nothing else you can physically do to help them.
The sad thing for me was that my mom gave up her fight. She lost her drive and desire. So I share that with you to say. In the midst of your storm and pain, try to always remain the positive person I know you to be. Continue to fight. If the pain ever gets to the point where you feel like you want to give up dig deeper. Look into your sons big beautiful eyes and FIGHT.
I will continue to walk in memory of my mom and in support of you and your sister.
Brianna and I miss you
As I read all the comments on Lupus I must say even at my age, hearing someone lose v their loved one from Lupus is overwhelming for me because I have it too, So it's like apart of me gone too. Yet those who are still dealing with this dreadful disease gives me the courage to fight, however I can't help sometimes when I feel like giving up or not getting out of the bed or waking up and not wanting to wake up. Sounds cruel but that's the feeling I feel at times. I work at a daycare center with infants from 3 months to three years and I be very tired before the end of the day. It's a different kind of tired I can't explain. I don't want to work anymore, I'm dead beat tired! Im 54 years old and I had this since I was fifteen years. I would tell my kids I wasn't well when they were twelve and up, so they would be aware of what I was going through if I so happen to die. That was my choice, I found out at a very young age. If they asked me what was wrong I would tell them and explain to them what it was. They didn't understand but they knew the name of the disease. I look like a million bucks but feel llke uugggh! sometimes. That's life anyways. You gotta take the good with the bad.
ReplyDeleteIf you choose to tell him? thats o.k If not that's o.k too. You choose the right time and when you hurt you can keep smiling that's fine,I chose to cry with my family. It's an emotion God gave us to releive stress and pressure. the family no matter how many gives us strength. Yet we live our lives with honor love and respect dipsite Lupus. It effects everyone reguardless of what race creed or culture, even men. One love Sisters and Brothers. Stay Healthy and Strong, You are doing Wonderfully. Thank you for the inspirations.
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