Parenting While Living with ESRD...It isn't for whimps.

[beckums70]

Hey y'all...Here I am, feeling so stressed and somewhat confused...again.

My son is struggling in school this year.  The last two years he was an honor roll student.  This year he has all D's so far.  He has a teacher who is kind of like a wet noodle...she's just too soft on him.  Additionally she's disorganized which is a recipe for disaster with a disorganized mom and disorganized kid added into the mix.  I'm trying to work with her as much as I can to fix the problem, but I don't know how much I can do.  Honestly, I'm super tired all the time and I don't always have the energy to stick with him through 45 minutes of homework that he doesn't understand or want to do.  He goes to an after-school program that up until this year, helped a lot with homework.  This year they've decided that homework isn't one of their priorities so they do not offer him help with it and when I pick him up it is usually either not done or not complete.  He mainly goes to this program for the homework help and to be able to interact with other kids. My only two other children are 12 and 16 years older than him, so he's basically an only child at home.  He gets very lonely and wants to play with other kids.

My question for y'all is this, would you, in my situation, disclose your health issues to your child's teacher?  I have not shared any information about my ESRD or dialysis with anyone at my son's school.  I don't want to be seen as "different" or make them think I'm using my disease as an excuse to not appropriately support my son's education; but honestly, it is a struggle, often, to keep up with everything concerning school, work, my other kids, my grandchild and my sick father.  Honestly, I could use a little empathy here...

I also have not told my close friend and co-worker about my disease, or that I'm on dialysis or on the transplant list.  He is elderly and very kind to me.  I think of him as a dear friend, but I haven't disclosed my health issues because I don't want him to worry about me.  I feel I should be looking after him, not making him feel that I need to be looked after.  The problem is, now that I'm on the list, I have to tell him.  I can't just take off for 6 weeks or however long to get a transplant without even telling him that I need one. 

There are quite a few people in my life that have no idea I have ESRd and am on dialysis.  I don't think they'd ever guess, honestly, because I think I do a good job of covering for my lack of energy most of the time.

I read today that hiding an illness can be detrimental to your health in various ways, and this got me thinking that perhaps I could make my life just a tad easier by not having to hide it anymore.  I don't know.

In the past I've had horrible experiences with jobs when my employers found out I had ESRD.  This was before I ever started dialysis.  I had two hospices for whom I worked, fire me after finding out I had ESRD.  One when they found out I was seeking a preemptive transplant, and the other when I had to start dialysis.  Both were very traumatic experiences that taught me it's probably best to not broadcast the fact that I have a serious illness.

How did you all handle this kind of stuff?  Does everyone in your lives know, or do you keep it a secret from some?






topic moved Mod Cas

[SutureSelf]

Hey y'all...Here I am, feeling so stressed and somewhat confused...again.

My son is struggling in school this year.  The last two years he was an honor roll student.  This year he has all D's so far.  He has a teacher who is kind of like a wet noodle...she's just too soft on him.  Additionally she's disorganized which is a recipe for disaster with a disorganized mom and disorganized kid added into the mix.  I'm trying to work with her as much as I can to fix the problem, but I don't know how much I can do.  Honestly, I'm super tired all the time and I don't always have the energy to stick with him through 45 minutes of homework that he doesn't understand or want to do.  He goes to an after-school program that up until this year, helped a lot with homework.  This year they've decided that homework isn't one of their priorities so they do not offer him help with it and when I pick him up it is usually either not done or not complete.  He mainly goes to this program for the homework help and to be able to interact with other kids. My only two other children are 12 and 16 years older than him, so he's basically an only child at home.  He gets very lonely and wants to play with other kids.

My question for y'all is this, would you, in my situation, disclose your health issues to your child's teacher?  I have not shared any information about my ESRD or dialysis with anyone at my son's school.  I don't want to be seen as "different" or make them think I'm using my disease as an excuse to not appropriately support my son's education; but honestly, it is a struggle, often, to keep up with everything concerning school, work, my other kids, my grandchild and my sick father.  Honestly, I could use a little empathy here...

I also have not told my close friend and co-worker about my disease, or that I'm on dialysis or on the transplant list.  He is elderly and very kind to me.  I think of him as a dear friend, but I haven't disclosed my health issues because I don't want him to worry about me.  I feel I should be looking after him, not making him feel that I need to be looked after.  The problem is, now that I'm on the list, I have to tell him.  I can't just take off for 6 weeks or however long to get a transplant without even telling him that I need one. 

There are quite a few people in my life that have no idea I have ESRd and am on dialysis.  I don't think they'd ever guess, honestly, because I think I do a good job of covering for my lack of energy most of the time.

I read today that hiding an illness can be detrimental to your health in various ways, and this got me thinking that perhaps I could make my life just a tad easier by not having to hide it anymore.  I don't know.

In the past I've had horrible experiences with jobs when my employers found out I had ESRD.  This was before I ever started dialysis.  I had two hospices for whom I worked, fire me after finding out I had ESRD.  One when they found out I was seeking a preemptive transplant, and the other when I had to start dialysis.  Both were very traumatic experiences that taught me it's probably best to not broadcast the fact that I have a serious illness.

How did you all handle this kind of stuff?  Does everyone in your lives know, or do you keep it a secret from some?

I would schedule a conference with your son's principal and let him/her know what is going on with you.  The uncertainty of your health might explain why your son has gone from honors to D's.  Then, to help your son cope with his Mom's illness, schedule some appts. for him with either a children's licensed social worker or child psychologist.  He's most likely afraid you're going to die and needs to freely express his fears and get positive encouragement.  Are your 2 older kids not involved?  Can either or both of them help him with homework and course work?

Next, find out why you have such a lack of energy.  If you are getting good - not just adequate dialysis and having your anemia properly treated (Hgb between 10.5-11.5 or even up to 12.0), you should have good energy.  Also, depression can cause a lack of energy.  Not at all uncommon for dialysis folks to experience depression.

To your question about who to let know you're on dialysis, I say only those who need to know.  That's how I have handled the isssue for the 38 years with ESRD.

I'm sure you will get many more responses.  Follow those that make sense and feel right for your situation. 

Hoping you can get things worked out for your son and yourself.

Best wishes ~ SutureSelf

 

[beckums70]

Well, I've been on dialysis for 3.5 years.  My son has seen a therapist and still does when he needs to.  He has not shown a great deal of anxiety with my condition. He was only 6 when I started, and had some worries then, but now it's just a part of life.  He does not worry that I'm going to die.  In fact he seems to not even think of me as having an illness and I don't exactly live like a person with an illness.

I am getting good dialysis and my iron levels are great.  I do live with a lot of stress and I do not sleep well.  This is not new.  I've never been a very sound sleeper.

My Nephro tells me that increasing fatigue is pretty par for the course with long term PD, even with good clearance and labs that are basically perfect every month. 

My oldest daughter is in school full time (12 hour days) and works.  She does not live close by and cannot help out much.

My other daughter lives nearby and does help when she can, but she has a toddler so her hands are pretty full too, and I end up helping her a great deal.

I work as well and my job requires a moderate amount of physical activity so yeah...tired.

[Michael Murphy]

57 years ago when I was in third grade my grades dropped form a's to d's.  Every one assumed it was because I was lazy.  5 years later when I was a freshman in high school it was determined my vision was 20/200 this meant without glasses I was leagaly blind.  I never realized I was supposed to be able to read the writing on the blackboard but watched the nuns hand to figure out what was being written.  5 years of frustration from my parents and 5 years of abuse from the nuns all based on never having a decent eye test. The moral here is have your child checked by a good pediatrician if grades decline.  Next check and see if he is being bullied, again a common reason grades drop.  Finally have a honest conversation with your child, at least tell him that you are sick and trying to do your best and try to find out why his grades have dropped.  Finallly make sure your child is being treated fairly by his teacher.  My option is a's  to d,s something is wrong.

[Charlie B53]

I agree that a big slide in grades are a pretty good indicator that something is wrong.  It can be difficult to determine the reason but it does need serious attention.

WHY are you not sleeping well?   Sleep is critical to maintaining health and even improves mental clarity.   Do you snore?  Have sleep apnea?   How do you know?    This is something you need to take to your Dr about.   There is a neat little recorder Dr can order for you to take home, sleep three nights while plugged into it recording your sleep patterns.   The recordings go to a specialist to determine if you need a CPAP.     I can attest, my CPAP makes a WORLDL of difference in my sleep quality.   Before, I was tired and dragging every morning.  I never thought or even had a clue anything was wrong.  I was just wore out.   Afternoons if I was driving I would start nodding at the wheel.  Came very close to falling asleep at the wheel far too many times.   Once past 3 or 4 o'cloock I was fine, but don't sit down in the recliner after dinner or I would be out like a light.

After getting my CPAP I was like a new person.   Refreshed and ready to go every morning.    It has made such a difference I won't take a weekend afternoon nap without it.   In 13 years already I have worn out two machines.   The Techs are amazed as most people won't bother to use it once they get one.

Get checked out.   It will make a significant difference in you.

[beckums70]

I have never been a very sound sleeper. Even when I was a kid I would wake up at the slightest noise or change in the room.  My ex husband swore that I never "truly" slept because he could whisper in the hallway outside the bedroom and I'd wake up.  I also have always had a lot of trouble falling asleep. I remember, as a kid, lying in bed for hours trying to go to sleep.  It was so frustrating!

I have learned some things that help: regular bed time, no sleeping in on the weekends, no naps, no caffeine after 2:00 pm. Keeping the room cooler, using a fan for white noise....

I do not snore (or at least if I do no one has ever pointed it out).  My son would know, since he still ends up in my room at some point at least a few nights a week, and I've recently vacationed with friends where we all slept in the same room and no one said I was snoring.

I take clonidine (blood pressure medication) which helps me fall asleep at night, but it only works sometimes and I still usually wake up several times during the night.  I just don't get that sleepy.  I don't know why?