Hello from Andi

[andisc40]

Hi everyone!
I am a 43 yr old mother of 4 kids from 18 down to 3.  After CHF episode last Thanksgiving, found out that I have FSGS-tip variant form which looks to have a better outcome or so it seems.  Being the strong one in the family and extended family, I  am having a hard time keeping it together like I normally do.  Glad to be on board with this life changing event.  Currently on Prednisone at a horrible cost to my body and hoping for a remission.  Looking to wean off meds as we speak-can't even walk anymore. Just want some sort of lift back.  Would love to know that I have some years left before dialysiis or transplant if at all possible.  Guess I'll wait and see and take life 1 day at a time. 

Thanks

Andi

[willieandwinnie]

Andi. You have arrived at a great place. We have lots of information and everyone here is so supportive. I am a caregiver but members will be along shortly to answer your questions. Again, Welcome. 

[paris]

   We are glad you joined us. I think you will find many answers to your questions.  I have FSGS, diagnosed 4 years ago and still pre-dialysis with GFR of 14%.  And there are others here with FSGS that have held off dialysis for awhile  I relate to being the "strong one" that holds things together.  There are days I want someone else to hold it together, but family is really what keeps me focused and moving forward.  This is a great group of people with lots of informationa and support to share.  As a mother of 4 also,    that is a full time job!  Looking forward to learning more about you -- and those sweet kids--teenager to toddler!  I am sorry you have had all of this to deal with at 43.     Let us know how getting off the meds goes. Take care 




Paris,moderator

[andisc40]

Thanks for the words of comfort.  This is my communication with others outside my family as of now.  Can't really stand explaining my appearance to the other mom's in the infamous school pick up line.  Nice weight gain of 68lb since May.  Can't wait till cool weather comes in so I can cover my HUGE neck with a scarf.  I get that look of pity and I am not one who does well with that.  Just want kids lives to be as normal as possible.  Been through alot-son autistic spectrum disorder(but doing great!!!), bad divorce(But happily remarried to great guy)etc.etc.etc.  I can't stand complaining yet here I am starting to not like myself.  Just when I say it is okay to have an off day and feel sorry for myself--I get a wake up call of all the great things I have in my life.  Looking to vent, cry, laugh, get informed from this sight.  I try to keep things as normal as I can at home (denial) so everyone is not affected.

Funny thing is I felt great until the 60mg of prednisone kicked in full force.  Seems to be doing what it was supposed to do, however the side effects have made it so I can't work, sleep well, walk well and many more pitiful issues.  Decided to go to 40mg these last 37 days. Tried to make 6 months like Dr wanted, but could not go one more day.  Miss my job, life, freedom, and previous neck.  HAHAHAH--I try to laugh and find humor as much as possible. It helps so much.

Thanks
Andi

[Joe Paul]

Welcome Andi , good to have you aboard.

[monrein]

  Andi.  This is the place where we'll understand right away when you talk about the various effects of this illness.  Glad you found the site and I look forward to hearing more from you as time goes on.

[boxman55]

Hi Andi, welcome to IHD hope you post often we would love to get to know you better.

Boxman, Moderator

[cookie2008]

 

[kellyt]

 

[G-Ma]

   Welcome to a great group..it is ok to have a pity party once in a while..ask me I will tell you and vent all over here it helps.

Ann

[twirl]

glad to know you

[devon]

welcome! 

I totally understand your predicament and hope you find relief from the lethargy.  Kids just don't seem to understand when a parent says, "I'm tired!".  THey think five minutes rest should be enough before we rebound. I am still resting and awating my second breath.  Should be here in about 40 years!

-devon

[lruffner]

Welcome Andi!   

[Bajanne]

Looking to vent, cry, laugh, get informed
Andi

Welcome to our community!  Happy to announce to you that you can fill your above prescription right here!  That is just what we are here for and what we do best!  You have certainly been faced with challenges, as we all are here, whether personally or someone we love.  But we are stronger together.  In fact, I have to let you know that you now have another family, a caring and sharing international group.   Please read as much as you can, and post as much as you can.  we want to know how things are going with you.  Looking forward to hearing from you.


Bajanne, Moderator

[annabanana]

bajanne is so right: we are stronger together.  Andi. From now on you will always have understanding people to talk to and help you through bad times and also to make you laugh a lot I, also, am a mother of 4 with large differences in ages. Let your older ones help you a lot.

[Wayne]

  Andi!  There are several of us on here with FSGS...and listen to Paris brag about her 14%!  Just kidding Paris....   I was up to 240 mg of prednisone at one point and I know what you are going through.  I put on about 50 lbs of water weight and I looked nothing like myself.  It would irritate me when my family would say "you look good."  I know they were trying....but come on!  Hang in there...I am down to 8% and am still trying to hold of the d, but I am probably getting pretty close now.

[aharris2]

 


cheers,

Rolando