OT- Anyone with medical problems fell guilt with kids?

[SarahKate]

First of all, I feel for all of you who are being great parents and also struggling with health problems.

If you didn't have some degree of parent guilt, there'd be something wrong with you. I can guarantee that if you were perfectly healthy, you'd still find something to feel guilty about. It's up to us to steer our kids in the right direction, make them responsible and try not to second guess ourselves over every little thing. I struggle with this all the time.

I feel guilty if I don't spend enough time with her. I feel guilty if I spend TOO much time with her. I feel guilty if she watches too much TV. I feel guilty about a LOT.

 

[bnhasak]

I feel that way every day as well. I have vasculitis as well as Addison's disease, and a few other lovely health issues. While I wouldn't want anyone to have health problems it is encouraging to hear I'm not the only Mom out there and that I'm not the only one feeling bad and sad for my kids.

My health problems keep me from doing a lot of things I wish I could do with them. My daughter remembers fun Mommy but my son only remembers me as sick and "puffy". I am on steroids/prednisone and the puffy face and weight gain makes me most sad. Kids have told my daughter she has "the fat" mom and my son doesn't like my "puffy face'. He misses the way Mommy used to look. He's only 4 and doesn't understand that I can't get rid of it.

The steroids also cause me such tremendous mood swings that I am quite literally "mean Mommy" some days. That breaks my heart more than anything.　That the drugs that are saving my life are also taking away little pieces of it every day.

I'm having a down day but you all give me inspiration and hope that tomorrow will be better.

As long as we keep being given tomorrows I guess there is always hope?!

 

[cassiez76]

It is arthritis in joints which are usually covered with psoriasis. The psoriasis actually causes the arthritis. Its typically found in knees and elbows.

yup....but with me it was everywhere. i could hardly move. i joke a 90 year old moves faster than me!

and yes the shots are bad. enbrel isn't too bad. it doesn't make the horrible clicking and swooshing (best i can describe it) sounds that humira makes.
that clicking always makes me cringe.

 

[shaylahc1]

I feel that way every day as well. I have vasculitis as well as Addison's disease, and a few other lovely health issues. While I wouldn't want anyone to have health problems it is encouraging to hear I'm not the only Mom out there and that I'm not the only one feeling bad and sad for my kids.

My health problems keep me from doing a lot of things I wish I could do with them. My daughter remembers fun Mommy but my son only remembers me as sick and "puffy". I am on steroids/prednisone and the puffy face and weight gain makes me most sad. Kids have told my daughter she has "the fat" mom and my son doesn't like my "puffy face'. He misses the way Mommy used to look. He's only 4 and doesn't understand that I can't get rid of it.

The steroids also cause me such tremendous mood swings that I am quite literally "mean Mommy" some days. That breaks my heart more than anything.　That the drugs that are saving my life are also taking away little pieces of it every day.

I'm having a down day but you all give me inspiration and hope that tomorrow will be better.

As long as we keep being given tomorrows I guess there is always hope?!

I was on prednisone for 3 years so I feel your pain. Have you thought about anti-depressants to help with the mood swings? I have always struggled with depression and being on prednisone nearly set me over the edge. I ended up seeing a psychiatrist and now I take 2 anti-depressants and I feel SO much better. For me it wasn't so much being ON the prednisone, but coming OFF of it. In any case, I'm the "fat" mom too so I feel for you there. I just wanted to suggest the anti-depressants because being chronically ill in and of itself is depressing....add on the mood swings caused by the steroids and that could make anyone feel like they are losing their minds.

((((((HUG)))))))

 

[bnhasak]

Michele, thanks so much for the advice. I probably should try an antidepressant for my families sake if not my own.

What is so frustrating is I finally got off Paxil CR (which I had been on for anxiety attacks) 2 years ago and I hate to go back on anything. Though I probably need to at this point. There is no promise I'll get off the steroids this time and I hate feeling like this.

I see that you have vasculitis as well. I never run in to anyone under 70 that has vasculitis. LOL! I have the small vessel kind that makes the lovely petechiae spots all over my skin and causes havoc with the kidneys.

I have been on Dapsone for it for the last 5 years and it has been a miracle drug for it. Complete remission from the vasculitis the entire time on the Dapsone. Sadly I lucked in to other health problems once one was figured out. LOL!

Thank you again. I do feel that I need to talk to someone about the issues I am having regarding getting yet another chronic and scary disease or two. I'm not handling it very well and the prednisone only magnifies these problems.

Sending you lots of thanks and big healthy hugs!

 

[crashbb]

As the kid in the equation (my mom was diagnosed with breast cancer when I was about a year old)...

When I was very young (say under 5 years), I didn't notice. I just assumed that all moms took drugs everyday and got blood work regularly. I knew it wasn't an adult thing, because my dad didn't, so I thought it was just something special for moms. I also thought that all moms had to take regular naps and that all houses had their own medical waste disposal buckets. I figured that all moms lost their hair at some point. Perhaps because it had always been part of my life, I just didn't know any different.

When the cancer came back, I was older and knew that it was different/weird/bad, but you still just have to suck it up and adjust (as the kid). The later years also included depression, major mood swings and suicidal tendencies on my mum's part, which was much tougher to deal with, but I still grew up unscarred.

Kids are tougher than they are given credit for being.

 

[shaylahc1]

Michele, thanks so much for the advice. I probably should try an antidepressant for my families sake if not my own.

What is so frustrating is I finally got off Paxil CR (which I had been on for anxiety attacks) 2 years ago and I hate to go back on anything. Though I probably need to at this point. There is no promise I'll get off the steroids this time and I hate feeling like this.

I see that you have vasculitis as well. I never run in to anyone under 70 that has vasculitis. LOL! I have the small vessel kind that makes the lovely petechiae spots all over my skin and causes havoc with the kidneys.

I have been on Dapsone for it for the last 5 years and it has been a miracle drug for it. Complete remission from the vasculitis the entire time on the Dapsone. Sadly I lucked in to other health problems once one was figured out. LOL!

Thank you again. I do feel that I need to talk to someone about the issues I am having regarding getting yet another chronic and scary disease or two. I'm not handling it very well and the prednisone only magnifies these problems.

Sending you lots of thanks and big healthy hugs!

Thank you! Yes vasculitis is scary stuff....mine is attacking my kidneys as well. I have a very rare type of vasculitis (it's called Cryoglobulinemia) which makes me very popular with the doctors because it's so rare I guess people who have Lupus and other connective tissue diseases can get it as a "side effect" of having their immune system hyperstimulated by the disease. I was on prednisone for 3 years and actually felt much better ON it....but as you know prednisone is really hard on your body so coming off of it was my only choice. I take Plaquenil for the Lupus which doesn't do much so most days I feel pretty tired. I don't really have many "remission" periods, mostly I am just drained every day. Now my joints & muscles are starting to hurt so I hobble around like an old granny some days, sigh Yes being chronically ill is the pits!

Feel free to PM me anytime if you want to talk