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Date Joined Mar 2006
Total Posts : 2592
Posted 9/2/2008 8:28 AM (GMT -6)
On another forum, I ran across a beautiful post from a woman whose mother had a chronic illness, and I know that those of you with small children will love reading this. I hope she won't mind my sharing it with you. It's too important a message to not pass along.
"I grew up with a mom that had Crohn’s (another auto immune disease) and she was sick a lot of the time. She was a single mom and I was a single child so we only had each other. I had to deal with a lot starting at the age of five, but I knew that my mom loved me, that we were each other’s strength and was grateful for the things that we could do together. Always talk with your kids and make sure they aren’t keeping things bottled up. Let them know that they can share their fears and frustrations with you and that together you can work something out. Try for special nights like Wednesday movie night where you rent a movie and get special snacks and all curl up together in the bed or a Friday night board game night. Things that you can still do while you’re tired and not feeling too great. I used to read to my mom. Sometimes a story, sometimes a poem I had written or even sometimes an entry in my diary. My mom and I started having trouble when we both tried to keep our emotions in and relied on only ourselves. That’s a scary place to be so communication is definitely key and spending time with your kids will help them to communicate. They will remember all the times you spent with them and even if you weren’t feeling the best they will remember that you tried."
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin
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Date Joined Sep 2003
Total Posts : 2889
Posted 9/2/2008 11:41 AM (GMT -6)
Thanks for the post. It's encouraging to hear a young woman didn't totally hate her mother for being sick. I have to say I one of those "Moms" that feels guilty. I have a 15 yr old daughter and if you ask her when did you mom get sick, she'd reply "my mom has always been sick". Nikita doesn't remember me being well. I had her in 1993 and I started going down hill in 2001. She doesn't remember that I worked part time and was her elementary schools volunteer coordinator, that was like a full time job. I volunteered at all school held actives and I also handled disputes between teachers and volunteers and the volunteers themselves.
It saddens me that only child can only remember me as "sick". She expressed the other day to me that she's worrying about
when I'm gonna die. She sees me worsening daily before her eyes, it breaks my heart because I feel like I'm forcing my daughter to watch my demise. I want to be there for her and I do the best that I can, but I still feel bad that it's just not enough. I'm so sadden that I took the risk of taking the cytoxan and now I've sentenced myself to death. I'm having a difficult time getting past the guilt that I ruined out lives.
Anyway, it was nice to read how a young woman handled her mother's battle with crohns disease. I want to thank you for thinking of us Moms and for encouraging us.
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.
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Date Joined Oct 2004
Total Posts : 2244
Posted 9/2/2008 4:26 PM (GMT -6)
Pat, thank you for sharing this. I started getting sick when my youngest was 7 and I've also had those same feelings of letting my kids / family down. Thanks again for sharing
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~
DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Darvocet (as needed) and magic mouthwash (for mouth sores)
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