wow, just found out my mom had sjogrens...

[rudytudy]

Just called my stepdad and asked him if he's heard of sjogrens.   He HAD and said that when my mom was diagnosed with pulmonary fibrosis they did some tests to check her out and they looked for SS/SLE and found SS.  I asked him why I'd never heard them discuss this.  He said that when she got the diagnosis of 3 to 5 years to live with the pulmonary fibrosis that the SS didn't seem important to bring up.   I asked her years ago what could have caused the fibrosis and she said 'they don't know'.  Anyway her husband told me today SS was in the blood work.   Mom did good and survived 7 years and passed two years ago.  We were extremely close.
I'm actually relieved in a weird way that I know WHY she got pulmonary fibrosis.  I know that the complications of major organs (like pulmonary) are the exception and most do not get that.

Now that I'm educating myself on SS I've been telling my husband..."I think mom had this...she had all the symptoms for 20 years...and then the fibrosis..."   Talking with my step-dad today has brought me great closure...and an interesting sisterhood with my mom...
I always used to laugh at her clumsiness and be tickled by her fogginess, etc., etc. 

Just wanted to share...    : )

[Luna]

We mothers try to protect our children from worry and fear. So we tend to keep secrets. Im sorry to hear of her hardship and suffering. Im glad you found out and are able to deal with things..

Luna

[lolo1979]

Awww, that makes me sad. Did she know you have sjogrens? Are you getting more aggressive treatment now, knowing what you know?

My mom has sjogrens too, but refuses to explore the possibility. She thinks it is just 'her'.  In fact, she was here today and her eyes are so bloodshot that they look painful. I asked her if she realized how bloodshot they were and my dad goes "they're always like that"

It tics me off that her docs are all missing this in her. She has a b12 and d deficiency, dry eyes, osteoarthritis, and so on.

Anyway, the medical field is right on-- these AI diseases are genetics meets environmental trigger-- all the way.

[jazzlover]

I think my mother also had it. I remember her ALWAYS drinking lots of water. ( checked for diabetes numerous times ) and she complained of "gritty eyes" .. exactly how mine feel. She also had very dry skin.

[quietdynamics]

When the Rheumatologist mentioned genetics I had my daughter tested. Passed on the info to my mother and her ANA were tested as well.  So far we have documented 6 females with thyroid issues (some requiring removal, etc., my daughter and myself being monitored) on my maternal grandmothers side.  I passed on this info to a cousin with whose thyroid was removed and has twin daughters. She thought she was an isolated case.

My brother had ITP when he was very young and outgrew it. My brother has a son in his late 20's and I do not believe he knows anything about that. Or about my condition.

My daughter has already already stated that she does not want to have children. She has been hospitalized after her thyroid went hyperthyroid (and she had been shuffled about, until I took her to ther ER) and of course is witness to my experience. She wants to become a counselor.

My point is that sharing the information helps Drs. establish a baseline and family history. And while a medical event may skip a generation (or family unit) it may help the next, or a relative.

[cargillwitch]

my mother has had sjogrens for probably close to 20 years but only diagnosed about ten years ago. She has primary biliary cirhosis( stage  four liver failure), and RA as well. Having her to talk to has been so very helpful for me on one hand but scary as well. I see what could possibly happen to me down the road. She was a bright articulate, energetic women who has just disappeared into incredible brain fog.
Genetics? I was doomed.Besides my mom my maternal grandmother had Hashimotos, osteoporosis, and RA.
My cousins( all again maternal) have  collectively, 3 cases of type one diabetes, Graves disease, Crohns, 2 celiacs,and Raynauds. My sister has crohns and fibromyalgia.
Ain't we the blessed lot!
I have three daughters ( 23,21 and 14) and one son(17) I worry so much now since my recent diagnosis that they also may develop AI disorders at some point.



42 yrs old. Sjs, Raynauds

[irish]

I think that my Mom had sjogrens also. Way back when I was a kid I remember her having a lot of heartburn issues and she would eat roast beef sandwiches with lettuce and salt and pepper on toast--without butter. Makes me think the gallbladder might have acted up also.

She also had those terribly dry, gritty eyes and had to put eye drops in a lot. The big thing I remember is her having such a dry throat that she would have to get a drink when we talked on the phone. She also was always clearing her throat and coughing.

In the later years she had some brain fog that would come and go. Towards the last months of her life I think she may have had some vasculitis in her brain as she got more forgetful. When she died we found that she had put notes in her dresser drawers to remind her what was there.

YOu would find  "bras" and "panties" written on rectangular shaped pieces of paper and laying on top of the items. It was then that we knew the extent of her brain issues. Back then they did not know much about sjogrens. She died from a massive brain hemmorrhage at the base of her brain. No suffering--just lasted 48 hours or so. Life is fleeting!!!Irish

[gold55]

My Dad died young of multiple myeloma and my sister got non-Hodgkins lymphoma in college.  My Mom has RA, MG, secondary SJS, heart problems and many other issues from the medications she's used....my brother has gout, psoriasis, diabetes and on and on so I'm just waiting for them all to come tumbling down on me   I never stressed about genes until recently.

[irish]

gold, I hear ya!!! My hubby goes to the same immunologist that I do and he was diagnosed with celiac disease and microscopic colitis back in 1978 and in 2010 he was diagnosed with hypogammaglobulinemia.

He was at the doctor this week and we got to talking about when we walked down the aisle we were both sick and didn't know it. We just lived with all the stuff until it got so bad we had to doctor. Our 3 kids are all having some type of autoimmune issue but they don't want to doctor yet cause they don't want to deal with the expense.

Life just isn't fair. My one DIL thought I made the remark that I was sorry that I had kids knowing what I do now. I told her I was not sorry that I had kids cause we didn't know any different in those days. I just feel bad that all this stuff gets passed down the line. Irish

[Navigator]

My mom never talked about medical problems with us. ...but I have made the choice to be very open with my kids so that they can start now to take better care of themselves.   It is tough with 20 year olds who think nothing bad can happen to them...but I have succeeded in getting them to take Vit D. supplements and eat more fish since they all live in the northeast.

[Jorja]

I think my dad had Sjogrens, too.  For years he suffered with extra dry skin, dry eyes, and ears so dry he couldn't stand it.  He also drank water all day long - said he was just dry feeling.  Later he developed severe neuropathy and in 1995 Daddy died of lymphoma.  It's really scary to think that SJS runs in families.  I pray that my children and grandchildren do not have to go through this mess.

Blessings,
Jorja

[jazzlover]

PS.. My mom also had trouble with choking. She feared choking to death. She died from heart and kidney failure instead.