OK OK! How do I get my neph. to tell me what caused it? In the past I was somewhat heathly other than asmtha. I don't have HIV, no known birth defects, and the only way I found when we did. I just had my first daughter. The docs. said everything will be back to normal, after she comes out. WRONG! Here I seat today moanig and groaning. Any idea how to find out? The only thing she has told me is it's FSGS. I have spoke with my husband about changing nephs. I just don't know what to do.
Nobody knows for sure what causes FSGS. I have an excellent neph and he specializes in FSGS and he does not know. They think the Strep virus may have something to do with it but are not sure. I am in a Nationwide study at NCU and they are looking at everything. What you eat, hobbies, work and even how many times a day you brush your teeth. I have FSGS and cannot imagine how I got it. Maybe one day, we will know and when they find the cause, they may be able to find the cure. Keep the faith!
Thank you! You made me feel so much better, everything starts to run throu my head. I mean I know I don't have anything wrong with me as far HIV. To much time on my hands. I started thinking what if that or this. Sounds stupid that's just me.
It's not just you! I have done it too... I have a great neph also and he has told me that he does not know why I have it... It is frustrating because I wonder if there is something I could have done to prevent it... I've also asked if there are things that I can be doing now so that it would just go away... But there isn't... and I hate that! So, I do everything that I should do (eat right, exercise, take my meds) and pray for remission... I try to stay busy and since I don't feel bad I just try to forget about it... It has also taught me that if there is something out there I want to do, that I should do it (ok- within reason!)... For example, my husband was invited to go to a symposium in October and it means taking 2 days off of work for me which is a lot since I am a teacher and it means writing lesson plans, printing everything that is needed, and then grading everything when I get back (It's a lot of work for a teacher to take a day off!) but I'm going with him to the symposium anyway (It's at the Biltmore mansion in SC and it looks beautiful!)
Sorry I rambled, but my philosophy is I know I have it but it does not matter why now I'm going to go live life to the fullest! And yes, it took me awhile to get to that attitude!
Take care-
Linda
My husband keeps me from forgetting this freakin disease. I hate it so bad. Sometimes I feel like laying up in bed and crying. I know that's know going to help, plus I always tell my girls that you are big girls when you don't cry.
Well, as you have read on many posts, we all get down and depressed sometimes. So, hey if you need a good cry? Go and have one...Scream and yell and let it all out if you need to. You will feel better for a while anyway. Why does your husband keep you from forgetting this disease?? My husband never mentions it. I wonder if he care at all. Then I worry about him instead of myself that when we get the news that i have start dialysis that it's going to hit him like a brick!!! But like fsgsblahs says, she thinks they are aware and just aren't quite sure how to handle it. I think it's also hard for them to understand this disease. As horrible as it is and other than if you are on pred. and you see those side effects, we don't look all that sick. You know as long as I get up and put some make-up on and fix my hair, other than my swollen abdomen (and i hide that the best i can), i don't look sick. Some people actually have to see evidence of sick to have empanthy. You know I just got insurance thru my husbands work and i had an appointment w/my p/c to get the ball rolling again, and as i was leaving he said i'm going with you. So, we walk in the Doctors office and the girls in front office say... Oh my Miss Sandi you look so happy and healthy!!!
I'm thinking, THANKS, but my new husband probably thinks i've been pulling his leg about this illness. But then i walked out with 13 rx's and 3 scheduled tests and an appt. to see my gyn like yesterday, i think he got the idea. But hey, i'm a jeans, shirt and sandals kinda gal, but at least trying to look good really does help. So, go have a good cry and then do something a little special for yourself, and enjoy your family. Do you like to cook? Think of something you guys can do together in the kitchen or outside on the grill if you can. It doesn't have to cost alot. So, that's my advise for today. It's a good day today. We will see what tomorrow brings??
Oh, and as damned long winded as i just was. My neph doesn't know how i got fsgs either. I was told it was idiopathic by 2 nephs. Now the only question is how to stop it??!!
We should NOT worry about the why and how but what we are going to do to get better. No one knows why and the only thing we can do is stay possitive always.
Hello, and as many people have already said, concentrate on getting better, not on what caused this issue. I was diagnosed since Oct 2005 and the worst is yet to come. You mentioned changing your neph, well let me tell you, if you are having doubts about your doctor, better change now before they lead you down the wrong path. I did not change my doctor soon enough and wound up in the hospital for the second time because the doctor was not fluent enough with fsgs, (even though he said he was). He was prescribing meds based on my reactions to other meds. When all was said and done, I was on 13 diff medications and about 7 of them should not have been used while I was on prednisone. (If you are not on prednisone as of yet, don't get on it). You must feel comfortable with your neph in order to make things work for you. Remember, this disease is uncommon to most people and not many neph's know about it. Some may think you are their way of learning, but don't be fooled. Also, find support in someone because you are going to need it. If your husband does not understand, or refuses to, come back to these chats and we will help you out. Had it not been for my wife and 3 kids, I think I would be in a different place and much worse off. You can write to me anytime, I'll support you.
Roberto
WPB, FL
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