Not the mom I used to be

[gymcoach]

I have found as this disease has progressed to become intolerable, that I have become less of a mom. I am on edge a lot and agitated easily. I tend to even tune the kids out sometimes. I wish I could get past some of the pain and be my old self again. I want to spend the day with as much energy as my children. I want to enjoy them more. I feel like I am here, but I am missing it all.

[MSBIGFULTON]

I KNOW HOW YOU FEEL, I FIND MYSELF GOING THROUGH STAGES, HAPPY, SAD, DEPRESSED, ETC...
WHAT MEDS ARE YOU CURRENTLY TAKING? SOME OF THEM WILL MAKE YOU FEEL THAT WAY, OR INTENSIFY THE FEELING. I KNOW HOW DIFFICULT IT CAN BE, AND IT IS VERY HARD FOR OTHERS TO UNDERSTAND, ESPECIALLY KIDS. HAVE YOU BEEN RECENTLY DIAGNOSED?
MY THOUGHTS ARE WITH YOU

[justdeb1]

((gymcoach))

I know how you feel. Its very frustrating to say the least. I have a 10 and 2 year old. My daughter has taken the brunt of this disease, so to speak, because she was 6 when I was diagnosed, so for her, I know her lifes been hell these past 4 years. I was very active prior to IC...hiking, working out everyday, running, skating, you name it I did it. Now I cant do any of those things, walking 6 houses down to my daughters school is a chore for me, most times I drive my car and its only 6 houses away..I can see it from my porch! My son doesnt understand yet..but I cant play with my kids like I used to be able to. This disease takes a toll not only on ones body, but on ones mind and spirit. Some days..I just want to say..forget this..this isnt living life...this is controlling my life. But then I look at my kids, and my husband, and my family...and then I look at other people who have things far worse than I and I feel greatful I have what I have. I'm not dying...although, sometimes I feel like I am. Bodily..I'm not dying...soulfully...spiritually, sometimes I do feel that way. I wish I were one of those persons that can "give it all to God" and put everything in his hands, and I try to do that, but there are times that I get angry with God and I get angry because I'm sick and cannot work, but I know He'll forgive me for those thoughts, because He is all forgiving. I guess I just dont have the faith that I see some other people with...just to let it all go and give it to Him. I know they say He wont give you more than you can handle in your lifetime, but I do question if He often has a weird sense of humor at times .

Hang in there..you're not alone

hugs to you
deb

[kimmi158]

{{{{{{{{{{hugs}}}}}}}}}}}}
I know how you feel my daughter is 6 and my son is 3.I have had this way before either were born.
I have never been the mom I wanted to be as far as having energy and taking them everywhere all the time even though I force myself to do what I can.The last year has been the worst having a hysto and the ic problems .
I just take it day by day.I know what my daddy says is true( and this too shall pass)
I'm just still waiting and praying,but most of all you can't give up ever.
I will be praying for you and everyone I know first hand how hard it is.
God bless you all,
Kim

[gymcoach]

Thank you all so much for writing back. I won't say I feel better knowing I'm not alone, because that means y'all are feeling and enduring the sames things that I am. And it is so horrible to feel like you just aren't doing for your kids like you feel you should or would want to. I have been diagnosed for about 6 months, but symptoms started gradually over the last 4 years. The pain got very unbearable about 8 months ago and prompted the visits to the doctor. I think that this last year has been unbearable. I worked for the school as a teacher's aide and felt necessary to finish the school year for commitment reasons and if I ever did feel well enough to work again. I feel like I barely made it through to summer and paid little attention to the kids. Now that the job is over, just 2 weeks ago, I want to try to pay more attention to the kids. Instead I have felt very bad and agitated at all that they do. Hubby and I did make a short 2 hour trip to local science museum. But it was so sad to watch them from the bench while husband and kids played in the water and blocks, etc. I am currently taking Elmiron (4 a day) and Zyrtec. I take a Zanaflex (muscle relaxant) if I know hubby can watch kids the next morning, but haven't decided if it is helping bladder spasms much yet. I am considering trying an antidepressant for a month until I can schedule and interstim trial. Kind of something to get me through until then. I'm not sure if I really want to go that way. I am scared on how it will affect my personality.

[Amanda]

I believe children understand more than we give them credit for--- they love you and do not like to see you in pain, and they know when you are having a hard time. They do not think of you as less of a mother, but more of a survivor.

Amanda
(an_johnson@tir.com)

[lady pilot]

My son who is twelve spent all his life with a sick mom and I find it has made him a compassionate person. When someone is sick he is the first to jump and ask if he can do anything for them. I used to be the outdoors person also and of course that change. Now we read together, board games or just watching TV/movies together and I feel that it is the same as if you where chasing them around the yard. Children do have a way of understanding and dealing with issues in their lives. No matter that you have IC you are still their Mom and that is all that matters. God Bless

[redstonebef]

Gmycoach. I have had IC about 30 years. So my girls grew up with it too. But I have learned now you need more help with pain. I know first hand how it feels. Don't let your Dr. make you feel bad about asking for pain relief please. I waited too long and now one of my daughters is bitter because Moma was always sick and she had to care for her. She loves me dearly but she has been careing for me a long time. I just cry for you young mothers that are hurting so bad and the Dr. will not aggressively stop it. All my hugs to you.


redstonebef

[neugass@yahoo.com]

You say you may try an antidepressant. I say try it! You only need to be on a low dose (I take .25 mg once a day). I totally believe it has changed my life. I was exactly like you -- 2 young kids and my life slipping away due to constant pain. I went on Elmiron, and then Detrol, which helped a little. However, it was when I added Elavil that the pain pretty much disappeared. I've been on these 3 drugs together now since Sept 1999, and feel close to 100% normal. Please don't give up hope. See if your doctor will let you try different meds, in different combinations. It's worth a shot!

Beth

[Teri]

PLEASE try the antidepressants. When my depression is in check I can cope with the pain so much better.

My kids are adults now. They were brought up by me, no father. They survived me working 60 hours a week, 8 years where I was a total drunk, and they survived me getting sober (when they were 13 and 15 ~ still can't figure out why I wanted to get sober with them at those ages )

Kids do great INSPITE of us. Stop beating yourself up so much. You were there with your kids, it doesn't matter that you were sitting, you were there and that is what you have to focus on when you have a chronic illness.

Please, take a day and be kind to yourself