I have a great support system. I am a single mother of 8 year old boy girl twins. This week is my sons first week ever of football camp. I work ten hour days (in a surgery center) only to go set the next three in the Las Vegas sun and heat. I have faithfully put on sun block and not got much of a sunburn. Stayed hydrated and kept covered. Yesterday I came home sore and swollen and unable to control my body temp. Today I can barely get off the couch since I got home 30 min ago. This comes after a my biggest flare of the last year. Remember i am newly diagnosed. I am establishing care tomorrow with new rheumy on new insurance. Back to why I post…
There has to be more things that I can do so I can be there to support and encourage my kids to live a healthy lifestyle. Any suggestions are welcome.
I also live in Vegas so am well aware that we are having severe heat already. Perhaps not sitting in the stands, but laying a blanket with an umbrella might be better for you and after practice a picnic dinner. When I say picnic I mean drive through KFC or something of the sort, not you making a huge take along dinner.
Having been an undiagnosed single mother, it was difficult to be unable to see my son play football through high school, however it was in KY and of course cold/wet...ugh! Sitting on metal bleachers on top of it was undoable. What I would do would be to pick up him and some of his mates and take them to dinner if it was early enough. It was about letting him know that it wasn't a choice not to be there.
You need to explain to them that because of your disease, if you overdo on one day it may very well mean that you aren't going to be able to something else that is planned.
I know they are young, but they need to understand that if you can't take care of yourself, you can't take care of them.
Make a list of say 10 boxes...going to the grocery store is 2 or 3 depending on how long. Going to the park is one. Doing the dishes is one, etc. Once those are checked off you are done for the day. It's called different things on different sites and it is going to make a difference if you are in a flare or not and you will need to figure out what your body needs and this is going to take some time.
One more thing...the sun is NOT your friend. I am so sensitive that even driving in the car will put me into a flare so that is something that is going to need to be explained also. Starting now, at their age, it very likely will become something of a habit before too long before all of you are slathering on the sunscreen and working together at the grocery store. These are healthy lifestyle changes that could actually be good for them.
I wish you all of the luck in the world.
DeAnne
Thank you Anne and Deanne. The worst thing about this disease. Once you learn it’s rules it makes new ones
Hello, even though my kids are much older, they try so hard to make me smile day to day!! That is because I shared with them of what was going on with me from day one . I feel no matter what -as a mother we should let our kids know first hand the TRUTH about what is going on with us as mother’s !!! Even if we don’t share with others first -my grandmother says it is a woman thing and part of our job . So sit them down and explain to them the truth, and rememeber be honest, and Most all , LISTEN to them with a clear mind and heart, don’t stress the conversation to a point were you start crying so they won’t get scared …hope things work out and my prayers and heart goes out to you and yours…Beverly L.
Beverly,
Excellent advice!
Hugs,
DeAnne
Hi, I feel that telling the truth about things give people the choice to deal with it are not to choose to deal with the situation. And also help you to move on to the next level , without wondering when would it be the right time down the line to tell them the truth ! So why not just say it from the start so that all who want to deal with whatever with you can except it and everyone can be on the same page of the matter with you. That just make more sense to me, say it from the start , especially if you love them dearly!!! It is only fair!!! Yes , we all want to protect those we love, but finding out things later cause more pain and heart aches , along with words and reactions that should not come out. Or on the other hand it might be to late for those persons to show how much they Really wanted to be there for you through the situation. Giving that choice makes a big differences in how people will LOVE you more-by respecting them from the start!! My god father died last year , and when the truth really came out , there was nothing no doctor could do for him. He fell out in the streets and when we found him (calling every hospital, jail, police department), finally the last hospital said they had him in ICUS for about3-4 days as John doe, just so happen a friend of the family saw him by walking past the room he was in , she called one of his sisters and that is how we found him. But of course when they got there the doctors said that there was nothing that they could do for him. That was a very sad moment for me. Within 2 days he woke up and was asking for me , his sister called me that nite to tell me that he was asking to see me. So i planned the next morning to go visit him -his sister called and texted me and said , that sometime after she left that nite he died in his sleep. Yes!!!, that bothered me for a couple of months, not being able to laugh one last time with him!! We use to joke all the time and he was really a cool guy-I miss him sometimes, but hay! Am glad that he was in my life, he gave some very good advice in a joking kind of way, he was sooooooo funny all the time no matter what the situation was you never knew if he was mad . That is really when I started letting people know the truth -even if it hurts!!!..Beverly L.
For the Love share !!!/>
whathappensinvegas said:
Beverly,
Excellent advice!
Hugs,
DeAnne