[Anonymous]

#1020038

The Information for family and Friends page is wonderful. I have emailed a link to it to several of my family members and friends to help them better understand what is going on with me. However, I have a 14 year old daughter and a 12 year old son that still did not understand even after I read it to them. My daughter understood more than my son. Anyway, my suggestion is that maybe someone could post an information page to better help children understand. Something with less complicated wording, maybe written at a third grade level. Something telling them how they can help a parent who has Graves. And to help them understand the emotional and physical problems that their parent is going through and how to deal with that. Also, I asked for suggestions on how to better control my emotions on another post. That, too, would be a great addition to the site, relaxation techniques, time outs, etc. And list how each of these techniques work for the parent on the children’s info page – so the child can aid in the parent’s technique building skills and tell the parent when they are having an emotionally charged moment so the parent can utilize the techniques! Anyway, just making a suggestion and I would be willing to do research on the topic to help build the pages if necessary! I am one semester away from a degree in social work, with a BA in psychology, BA in Rehabilitation Science, and 3 minors in child development and early childhood education and child welfare. I would love to help with this if the site’s owner would like to add such a thing to the site. It would give me something to do, other than sitting around here going NUTS! Also, this may sound funny but compiling research is one of my favorite things to do, so maybe it would give me a chance to do what I love doing (research and helping others). Leave me post here or email me.

[Anonymous]

#1075799

Dear Andreakay this is for your daughter and your son the ones who are older.

Dear children,
My name is Jocelyn, I am 34 I have Grave’s Disease. I have 4 children the oldest is 13 years old. He is such a great help to me. He had to learn at a very young age (5yr’s old) that I had a disease that was making me ill and I had to fight it. I did what I could and so did he and my husband. They helped where they could with laundry and cleaning and cooking and even just staying out of my way when I was what we call in the crazies mood. “the crazies” as we call it in my house is not offensive it clearly states what I am or was feeling at the time I was not well. I felt my entire body racing around like I had had 8 bowls of sugary cereal and then dipped into my moms coffee like when I was a kid.

There was so much energy that I didn’t know what to do inside my head. BUT then I was so ill and so tired in the same day that it made it seem as though I was just being lazy. It was horrible to feel that way and it was horrible to think someone thought I would let my house go the way I did just because I was lazy. My husband was very thoughtful and very understanding, he knew that there were certain times that I needed to take a break which being a stay at home mom it is hard to do when you have kids and babies to tend to.

I’m not saying that you all have to do everything but you are both old enough to be able to do things for yourself and for the house.
Here are some tips for you kids that can help mom out;
Have a bedtime routine: It can be, make lunch for tomorrow, brush teeth and hair and wash face, or take a shower, get clothes ready for the morning and pack your backpack and have all papers for mom to sign done and back in your backpack, put your dirty clothes in the hamper(NOT 3 feet away on the floor).

Something that simply as to having a bedtime routine saves you half the time in the morning rushing around screaming and looking for something that mom has no clue where it is and starts to panic and wonder where it is. (yes all of us moms do that just to let you know lol)

Morning routine;
Take shower or wash up
Brush hair and teeth
Make bed
Bring everything to the door so that once you are ready to leave it is already there
Eat breakfast
Grab your lunch and go go go!!!

Afternoon routine;
Come home
Take a second to put your backpack in your room or where ever you do your homework
Give mom important papers
Grab a snack
Settle down for a few minutes
Then do homework
Do your chores;get laundry together and do a load,choose a day between the two of you that you do yours then the other do theirs
If there are other chores then get them done, whether they are outside or inside chores get them done so you have time to hang out
Eat dinner
Clean up kitchen after dinner, choose between the two of you who does what or ask mom to tell you each what to do. One does dishes while other clears the table and gets food in fridge.

Grave’s Disease is a very serious disease and there are many things you will not know or even if you hear them or are told them you wont understand. Anyone with this disease can be hyper one minute then tired and sleeping the next minute. There heart rate can race so high that they have to sit down because it’s going nuts. IF they are in danger they can do things that are very out of the ordinary and not even know who you might be or where they are(if that ever happens you need to get your dad or an adult asap)(mom will explain what I mean), there are so many feelings with this disease and what my 13 yr old says that he remembers the most is that I was always tired and anything like going out to play took a lot out of me. BUT he did understand and it’s just our life now. I am not sick at the moment so things are great but there are times when I’m not well and we start the whole “crazies” thing all over again.

It is very hard to think that a parent is sick especially when it’s something that at times makes them look like they are so active(that was me at times). But this disease takes a lot out of anyone and once on medicine then the normal mom will come back. Now if she was strict or not before this disease I’m not so sure so don’t get her cranky now or she’ll remember it later.

Try to help where you can, even taking out the garbage is helpful, folding laundry while you’re watching tv is a great chore to do at that time.

I do hope this helps. Just my opinions and some from my son (13yr).

As for andreakay, I will say that writing everything down on paper will help you a lot. Get a big calendar and write write write!!!. A note book where you put everything is key for memory loss. If I dont write it down I forget it.

I do hope you are on medicine to help with the grave’s disease. Good luck to all of you.

Mamabear,4 cubs and 1 husband

[Anonymous]

#1075800

I think this should be a part of “Graves Disease in Our Own Words”. It would have helped me starting out. Kids may not be old enough to do laundry, but they can carry to and from, so that it is easier. It really amazes me how much kids will help if they know that there is a problem.

Julie

[Anonymous]

#1075801

I’d be happy to put this in the in your owns words. But i tried to look it up and it says that that doesn’t exist. am i looking in the right place?

[Anonymous]

#1075802

Mamabear,

Thank you so much for taking the time to write all of that for my kids. I think it would be a great addition to the site itself, not just this board. Like I said, I gladly write up some stuff for the site for kids. Like I said before, I have a lot of experience dealing with children and extensive education on how to communicate with children of all ages. Mamabear, it really helped having my kids hear it from someone other than myself. But, I do think there should be a page here somewhere for kids to read to help them understand the disease and how it is effecting their loved one and what they can do to help. Like someone else said, you would be AMAZED at what kids will do if they know they are needed! Just from reading Mamabear’s post, my daughter has started helping me a lot more, without me having to ask her. That’s worth the effort it would take to type up something for a kids’ page here. Who is in charge of maintaining and providing information on this website? I would like to talk to them about doing something like this. We tend to forget that we are not the only ones in our house being effected by this disease! Our entire family is going through it with us! They are having to deal and cope too! The family information page is GREAT but it is more geared toward adults (spouses, siblings, etc) – but I feel like there needs to be something added that children can better understand – smaller words, coping skills for them, ways to handle mom/dad’s illness/emotional problems, how they can help, what to do if they are alone with someone with graves and something happens, etc. It would be a great thing to have so parents can print it out and give it to their kids. I hope someone can get ahold of me and how we can make a page like this for the site. andrea_kay@windstream.net

Thanks again, Mamabear for all your help!

Sincerely,
Andrea

[Anonymous]

#1075803

Andrea and children,

You are all so welcome!! Congratulations to your daughter who is helping you.

Daughter, I know it must be very hard to see mom go through this but know that there is a great deal of help out here for her and support and although it is hard for her she loves you no matter what her “mood” might be and by helping her you help your entire family grow stronger!! Go tell your siblings to help out where they can even if it’s just picking up the little papers on the floor that you would normally step over.

Andrea, I give permission to anyone who wants to put that into something on here. I don’t even see a family page on there?

Oh and also, yes I agree with Bobbi, Not everyone will be treated or not treated for the same reasons. If I had been told you NEED to get this done and was given the reasons for it I would have done it. But having the radiologist tell me to get a 2nd opinion was the best thing i ever did. I wake up everyday knowing that at any time I can come out of remission and am very aware of my body. My oldest son(13) knows to call for help if I act “off” and my younger kids ages 5 and almost 4 know how to dial 911 Lord forbid they ever need to. The baby (almost 2 doesnt yet but she’ll learn lol)

Prayers for you and your family. What I can say is live each day as if a new day. If you are angry with your kids then don’t go to bed angry (but punishments are still enforced LOL) Sorry kids just because mom forgives your silliness and getting in trouble at school doesn’t mean you get out of the punishment for it…it just means that she wont go to bed angry at you. lol

We can only do our best and hope we have the support. Hugs and prayers.

[Author]

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