2008 will begin our third year of the JRA journey. Three years, think about it.
My dad called last week and spoke with my husband (just a few days after my parents had been here at our house, mind you). He told my husband my grandfather had RA.
HELLO????? For three years, everybody has been saying no RA anywhere in the family!!!!!!
Now my dad says my grandfather had OA and RA. He says he asked one of my uncles. Three years people!
Now, if my grandfather did have RA , he lived well into his 80's BTW.
My aunt, who offered to stay with us when my daughter got out of the hospital, never mentioned it. And my grandfather lived with them at one point! My other aunt, who handles the whole geneology family tree thing more thoroughly than anyone else I have ever met, never mentioned it, either. The only strange disease in the family is some super low blood pressure thing a cousin has.
My dad also said a cousin on his mother's side is in a wheelchair from RA. First we've heard of her, too. Three years!!!!! That's kind of removed, though. I need to confirm this with the geneologist, too. How would she miss that? A wheelchair?
So, after three years, would you go to your next rheum appt. and say, "Guess what? I've been telling you wrong all this time. There is RA in our family!"
I wonder if my dad told my mom this. She already blames my grandfather for my crossed eyes, even though the ped opth I had to go back to as an adult said it was because I was a preemie. She would be happy to blame him for this, too, I'm sure.
Hubby sure is on that bandwagon, too. He is all excited, acts like we need to make a special call to the ped rheum with this breaking news. Um, I'm going to need to see some labs or something to back this up, I'm afraid. THREE YEARS!!!!!!
Suzanne,
Nothing I can add except--OMG THREE YEARS!
Families, aren't they just the best sometimes?
Good luck.
Andrea
I guess I would be inclined to think, well at least now you have a connection and let it go. It's not like it will change anything for your daughter. Yes, tell the RD, he'd probably be interested to back up the dx. Every family is different with the information they know and/or pass on to others. Playing the blame game doesn't really help anyone. My dad has a 2nd cousin with RA, who my mom will invariably bring up on occasion, when she's asking how I'm feeling. She'll be knitting with her twisted pointer fingers, telling me about this 2nd cousin I've never met. Sorry to hear it has taken so long to get this news. It seems that no one ever felt the need to mention this in my family. Well when the doctor at the er told me everyone had noduals in there fingers, my dad said no the don't i don't have any. Well a few months later he said well mom had some of those. Her dad had some efliction of his leg that wasted the muscles away. I have an aunt that won't get tested. That is my moms sister. I remember my grandmother always complained about a frog in her eye. I do get a muscle spasm in my eye. Grandmother is gone so i can not ask her she had alshiemrs and died at age 70. We do have graves disease and ms in our family. I called my aunt and told her to look out for her allergie daughter and granddaughter. Just keep an eye on them. And i worry my sister and a brother both have a fibro dx as i have had for years. I fear they have RA and are sero negative but not as advanced as i am. And i have a brother with chrons disease. So it seems hereditary now doesn't it. But alot of mystery as to where it came from. I guess you could tell the doc what you know but that you don't have much proff. Are any other AI diseases in your family besides RA ?Thanks all. I was already with Deidre's thought - it won't change things anyway. I just feel ridiculous going in saying, "My dad just realized HIS OWN FATHER had RA. Just now. After he asked his brother. After three years of HIS OWN GRANDDAUGHTER being sick."
About as ridiculous as, after a few months of going in saying nobody in the family had psoriasis, hubby announced he occasionally got a rash on his elbows that might be psoriasis. (This was prior to me permanently banning him from all dr. visits). Ped rheum perked up on that one, and said get it dx'd. Spent the next few visits being asked if hubby's rash had come back yet. No. No. No. Finally appeared. Good old dermatitis. Hubby should also be banned from looking at pictures on the internet, which is where he got the idea he might really have psoriasis in the first place.
Milly - according to all my credible family sources, no AI in the family.
Hubby's niece just had an implant deflate and they fixed that; when she gets fibro or something down the road, I'm not putting that in a genetic category.
ARGH....it just goes to show how "under the radar" this disease is. And yet it's so common! I really think the profile of RA could stand being raised a bit. Unless they are personally affected, people don't know thing one about it. That's why the research funding per afflicted person is so much lower than other chronic diseases.Talked to my mom, so it gets more unbelievable and confusing.
She said my dad just told her, too, and "it is the stupidest thing I have ever heard." Good, I'm with you......
....but added, "He didn't have RA. All he ever did is sit around and do nothing and say it hurt to move."
But wait, that sounds like......
But wait, I remember him (I was almost 40 when he died!!) and he never seemed any different than any grandfather I was around, including my other grandfather who was her father! So it still doesn't make sense to me. I never heard him say it hurt to move. I know he was in a lot of pain right before he died, and hospice was coming in, but he was very old. My other grandfather had already died of old age by then.
More family confusion - my mother is adopted, so genetics aren't involved - her mother almost cetainly had RA, but they never called it that. She had rheumatic fever as a child, and after that she was always just "sick". She used a scooter, couldn't manage stairs, had terrible leg pain, took tons of meds, which maybe were immune-suppressing because she got pneumonia a lot. None of this really stands out until you think about it, because my grandmother was also deaf. She lost her hearing during heart surgery in the 60's (too much anesthesia, they said?) and that was her worst disability and the families' greatest heartache. Whatever came from the rheumatic disease didn't seem as bad, even to her.
Mom's advice was to call the uncle who told my dad about the RA, if I really cared. I haven't seen or spoken to him since I was probably 15. I was considering it, then I remembered hearing that he fell out of tree and had to be airlifted and maybe had brain damage, so maybe I'll just let it be for now.
Yes my grandads mom died kind of young with kidney failure? She was bed ridden alot prior to that we always figured it was osteoperosis as her daughter had that really bad and thought that must have been it. Her daughter had a broken back in her fifties we thought that must be it. But then her daughter died of cancer. So maybe the osteoperosis had to do with the cancer more than heridetary. Anyway now i am thinking kidney faliure, in and out of bed bed ridden i will ask my mom they were pretty close, i was young when she died. One of her granddaughters has ms. But in and out of bed and kidney faliure could be RA. All of us females decendents have been frightened of getting osteoporosis and having a broken back in our fifties. It was always chalked up to some mystery dx what my greatgrandmother had. Anyway we sat around years ago and gave her the osteoporosis dx years after she had died, we still want answers. But remember RA comes and goes so if someone seemed ok the day you saw him , well people get confused by me, it's not like my whole life has been a flare just sometimes. And the degree and amount of flares people have are different.
I fully understand, i was diagnosed about 3 years ago too and my mother said nobody was sick for a long time, then one day, wayyyyy into treatment she said "oh yah, your uncle on your dads side and your grandmother (her mom) both have crohn's.
Then she tells me a couple months ago that my real father (i have no relationship to him) had RA too.
So, i still haven't told my doctor because she said it only meant something for research info to send in and nothing toward my treatment. But it made me mad too.
Suzanne -
Are you into geneology? If so, there might be info in the death records/medical records. Then you don't have to deal with the brain damaged uncle :-)
GoGo - There's no money for research because nobody cares about middle aged women. Period. Now, sexy young 16 year olds and there'd be telathons every week.
:-)
Pip
Now PIP i met a pretty young waitress she has RA in her right hand only she is 22. And me personally i am a middle aged lady but i am hot. I look like Meg Ryan except i am a year younger.