Re: Losing my mind

[Guest guest]

Hi Alesha,

When treatment begins things will get better.Right now you just have to push through and keep remembering things will get better.JRA effects the whole family and your 2 yr old is showing sighns of feeling neglected.Perfectly normal.Try to make time every day where it's just you and your little one.You don't have to make a day out of it,just lying or sitting together reading a book for 15-30 minuites.Just have some 1 on 1 time.You definately have your hands full with all those children but if any are sick or don't feel well they need TLC also.Right now your whole world revolves around JRA and you are feeling the despair and sheer exhaustion of it all.

Trust me,you will survive and keep your sanity but that doesn't mean you might not need a little help from your own doctor.JRA takes it's toll and it sounds like you are near the edge.Talk to your doctor,mayby you just need to have a really good vent or mayby an anti-depressant until things are more calm and normal.

I recall those bad ole days.Walking around in a daze with nothing but why,why,why going through your head.It is such an emotional time and very overwhelming.I think just by having a diagnoses finaly you will fell more at ease.

Just keep venting to us and we will all help you keep your mind.

Hugs

Becki and 5 systemic

[Guest guest]

Alesha,

I don't respond very much, but I always read the posts, there is a lot

of valuable information here. When I read your post, it brought back a lot

of memories when my son was first diagnosis. I think it is important to know

there are other people out there that have the same feelings you have. It is

a difficult time in the beginning, there is a definite adjustment period. I

will say, it gets easier, because you become educated and know more in

regards as what to expect. Therefore, you can help your child and your

family. My son was diagnosis when he was 3 he is now 10, I bought a baby

monitor and placed it in room and put the other end in my room, and

explained to him if he needed help or was awaken in pain to call me and I

would hear him. That way you can sleep in your own bed, it is important you

sleep,otherwise you will lose grip. My personal experience, I felt it was

very important to make Adam independent, and part of that independence was

for him to listen to his own body, as a general rule, if it hurts don't do

it. Educate your other children as to what is going on with , of

course you need to keep it age appropiate.....just remember there is support

out there and this board is a great place to get support and answer

questions. I hope this helps...

V

Losing my mind

> I'm sure you have all been there but since my daughter, 6,has

> been recently diagnosed I'm just absorbing the whole thing. She got

> a bad kidney infection in May and was hospitalized for 6 days. She

> hasn't been well since and last month, after switching docter, was

> diagnosed with JRA. Which we are actually relived to put a name to

> the problem, its hard to see a sick child and not know what the

> problem is. But I haven't had sleep in month, its seems like. Since

> she has been out of the hospital in May I have slept in her room,

> because she was up several times a night and we didn't know what the

> problem was. Now that we do know why I'm still not getting any rest.

> I feel like a whiner but I'm sure I'm not the only one that has had

> this problem. I would appreciate any advice on how to keep life

> going, we have 8 kids all together, 5 still live at home. Our 2 year

> old is copying behaviors like, my stomach hurts, I can't walk, I

> don't feel good.Which we know she doesn't feel good but I don't know

> what to tell her except that she will have to learn to deal with it.

> One good thing is that she will begin treatment with Shriners

> HOspitals soon. Anyone that has a JRA, weather you can afford it or

> not, should check into Shriners. SOme of the best care in the

> country is available and ALL there services are free, up to and

> including travel expenses to the hospital and lodging if need to stay

> over night.

> I guess I would just like some encouraging words on how to keep

> going. I'm so tired some times I think I'm going to lose my mind. I

> know the lack of sleep affects how I deal with everything but I don't

> know what to do to level things out. Any advice?!?!

> Alesha Gilleland

> 's mom 6

>

>

>

>

>

[Guest guest]

Hi,Alesha. Those first months after diagnosis are hard and you are

trying to juggle 4 other kids at home besides! It is very tough. The

best advice I can give is educate yourself and your family about this

disease. Learn whatever you can. The Arthritis Foundation has a good

website to begin.Lots of pamphlets are available for free there. And of

course, all the info here. You have all of us here who have been where

you are. We all understand what you are feeling - believe me. I cannot

tell you how even now three+ years after diagnosis the people here have

helped me when I get discouraged or just need to vent to someone who

gets it. They have been sanity savers for me! In our family, have really

worked to not make feel different because of his illness. We have

looked on it as a part of who he is, not all of who he is. As a teen, he

is having his issues with all this (like a lot of teens will) and thanks

to the encouragement I found here, he is now meeting with a counselor to

help him sort out his feelings. You are certainly justified in feeling

overwhelmed. I know I did. But reading about this disease, learning

about the meds, " talking " here with other parents, has helped me feel

more in control of this situation with this jra. I feel very confident

in talking with drs, and working towards what is best for my son as he

matures. For it is unlikely he will ever grow out of this, rather

it will probably be a medicated remission for him. Unless he somehow

goes into remission. He was 13 when this all started. Younger kids who

get this have a higher chance of growing out of it, I have been told. So

my focus has been helping learn to deal with this and educating

him as well. You don't say how old the other kids are, but I know my two

others had their concerns as well. That is why educating the family is

important. To help alleviate their fears. As for your 2 year old, I

agree that spending some special time just with her would help. Reading,

just sitting on the floor playing for awhile during the day (use that as

your rest time - guilt free!lol) would probably help so much. Sorry this

has become so long - just wanted to offer encouragement. Come back often

to vent! You are not a whiner - we all know how you feel! Michele

(16, pauci & spondy)

Losing my mind

I'm sure you have all been there but since my daughter, 6,has

been recently diagnosed I'm just absorbing the whole thing. She got

a bad kidney infection in May and was hospitalized for 6 days. She

hasn't been well since and last month, after switching docter, was

diagnosed with JRA. Which we are actually relived to put a name to

the problem, its hard to see a sick child and not know what the

problem is. But I haven't had sleep in month, its seems like. Since

she has been out of the hospital in May I have slept in her room,

because she was up several times a night and we didn't know what the

problem was. Now that we do know why I'm still not getting any rest.

I feel like a whiner but I'm sure I'm not the only one that has had

this problem. I would appreciate any advice on how to keep life

going, we have 8 kids all together, 5 still live at home. Our 2 year

old is copying behaviors like, my stomach hurts, I can't walk, I

don't feel good.Which we know she doesn't feel good but I don't know

what to tell her except that she will have to learn to deal with it.

One good thing is that she will begin treatment with Shriners

HOspitals soon. Anyone that has a JRA, weather you can afford it or

not, should check into Shriners. SOme of the best care in the

country is available and ALL there services are free, up to and

including travel expenses to the hospital and lodging if need to stay

over night.

I guess I would just like some encouraging words on how to keep

going. I'm so tired some times I think I'm going to lose my mind. I

know the lack of sleep affects how I deal with everything but I don't

know what to do to level things out. Any advice?!?!

Alesha Gilleland

's mom 6

[Guest guest]

In a message dated 1/8/04 6:03:43 AM Eastern Standard Time,

alesha1003@... writes:

<<

I'm sure you have all been there but since my daughter, 6,has

been recently diagnosed I'm just absorbing the whole thing. She got

a bad kidney infection in May and was hospitalized for 6 days. She

hasn't been well since and last month, after switching docter, was

diagnosed with JRA. Which we are actually relived to put a name to

the problem, its hard to see a sick child and not know what the

problem is. >>

Hi Alesha:

My daughter Caitlin has not been diagnosed officially with JRA, we are still

in the process of ruling in/ruling out things. It's so frustrating. She,

like your little one, was hospitalized with an infection and is still sick.

It's

been going on since mid November.

I just wanted to say that you are not alone. I am going through a lot of

what you are going through, though you finally have an answer, but that opens up

a lot of questions too. I have found this list absolutely incredible and a

life saver. Everyone here has been there, done that and are still doing it. I

try to take one day at a time and deal with what comes then. It's hard to

look back and start with the what ifs, etc. When I look to the future I worry

about Caitlin's health and how things will evolve, so I try very hard to stay in

the present.

<<Anyone that has a JRA, weather you can afford it or

not, should check into Shriners. SOme of the best care in the

country is available and ALL there services are free, up to and

including travel expenses to the hospital and lodging if need to stay

over night. >>

I do want to get a second opinion with Caitlin's illness. Thanks for the

information on Shriners. I didn't realize they could actually send you there

and

pay for expenses getting there and while there.

Take care.

Patty

[Guest guest]

In a message dated 1/8/04 11:38:06 AM Eastern Standard Time,

sylvan_luvr@... writes:

<<

As hard as it is to learn and practice, this boils

down to living just one day at a time, trying to

maintain hope, doing what we can with what we have and

our simply doing our best effort in all areas. This

does not fix anything, but it may help us if we can

avoid even a little worry. Worry can consume anyone

yet it doesn't change anything to come except to make

matters worse. This disease is impossible to predict

and if we think about it, so is life in general. Worry

adds to the stress and this is a great part of your

loss of sleep, which in turn adds to the stress ~

which becomes a vicious circle.

Hi :

This was very well said. So well, in fact, that I am printing it and putting

it on my refrigerator. I have the 'worry' bug big time.

Thank you.

Patty

[Guest guest]

-Everyone has given you some great advice, so I wont repeat it, but I

will say that you are in the right place for support and

understanding.

Take it easy and remember YOU need some time too....Im mommy to 6, 5

at home still and i understand just how busy us moms of many are even

on good days.

Hugs Helen and (6,systemic)

-- In , " alesha1003 " <alesha1003@y...> wrote:

> I'm sure you have all been there but since my daughter,

6,has

> been recently diagnosed I'm just absorbing the whole thing. She

got

> a bad kidney infection in May and was hospitalized for 6 days. She

> hasn't been well since and last month, after switching docter, was

> diagnosed with JRA. Which we are actually relived to put a name to

> the problem, its hard to see a sick child and not know what the

> problem is. But I haven't had sleep in month, its seems like.

Since

> she has been out of the hospital in May I have slept in her room,

> because she was up several times a night and we didn't know what

the

> problem was. Now that we do know why I'm still not getting any

rest.

> I feel like a whiner but I'm sure I'm not the only one that has had

> this problem. I would appreciate any advice on how to keep life

> going, we have 8 kids all together, 5 still live at home. Our 2

year

> old is copying behaviors like, my stomach hurts, I can't walk, I

> don't feel good.Which we know she doesn't feel good but I don't

know

> what to tell her except that she will have to learn to deal with

it.

> One good thing is that she will begin treatment with Shriners

> HOspitals soon. Anyone that has a JRA, weather you can afford it

or

> not, should check into Shriners. SOme of the best care in the

> country is available and ALL there services are free, up to and

> including travel expenses to the hospital and lodging if need to

stay

> over night.

> I guess I would just like some encouraging words on how to keep

> going. I'm so tired some times I think I'm going to lose my mind.

I

> know the lack of sleep affects how I deal with everything but I

don't

> know what to do to level things out. Any advice?!?!

> Alesha Gilleland

> 's mom 6

[Guest guest]

Definitely true- really it's true about everything in life. This is the same attitude I have adopted in regards to my son's eyes and all the problems he has. We just do our best and treat him as normal as possible and hope and pray that they'll be "normal" as can be at the end of all this.

----- Original Message ----- In a message dated 1/8/04 11:38:06 AM Eastern Standard Time, sylvan_luvr@... writes:<< As hard as it is to learn and practice, this boilsdown to living just one day at a time, trying tomaintain hope, doing what we can with what we have andour simply doing our best effort in all areas. Thisdoes not fix anything, but it may help us if we canavoid even a little worry. Worry can consume anyoneyet it doesn't change anything to come except to makematters worse. This disease is impossible to predictand if we think about it, so is life in general. Worryadds to the stress and this is a great part of yourloss of sleep, which in turn adds to the stress ~which becomes a vicious circle.

[Guest guest]

Alesha,

You have received wonderful advice from many others. hope you don't

mind a little more! My daughter is now 17 (she was diagnosed at 14).

I also have a 15 year old with asthma, tons of skin issues; a 7 year

old who was a preemie with psych and bahavioral issues with

developmental delays; a husband with a chronic auto-immune terminal

liver disease and then there is me, who got hurt at work and can no

longer work. I don't tell you all this for sympathy or anything.

Just to let you know that you do find ways to cope. At first it is

all overwhelming, you don't know what to do. And then it gets

easier. How? Not because there is a sure fire cure but you realize

that all you can do is your best and you will perservere.

I have found the only way I can help my daughter (and the rest of

the family) is if I'm okay. If I am overtired, overstressed, etc. I

am pretty worthless to them. I have found, like others have said,

that I need to carve out some time for me. Nothing expensive, or

generally too time consuming. I order books on-line from the library

and make time to read. I take a bubble bath, a walk, watch a " feel

good " movie. I say no to the things that I really don't have the

desire or ability to do (and no longer feel guilty about it). I go

to lunch with a girlfriend once a month, just knowing it will happen

strenghtens me. I went away for a few days last year, found out they

all survived, and plan to do it again this year. I vent here or in a

journal.

I have found that the less stressed I am, the less stressed they

are. My youngest picks on it easily and when I can least deal with

his behaviors, the worse he becomes. I have found the more in tune I

am with myself, the more responsive I can be for him. The same goes

with the rest of the family.

It is not easy but distant yourself from the disease. Do not let it

rule your household. We have had to shift our way of thinking. We

used to enjoy hiking as a family. This is no longer an option but we

can still pack a picnic and go somewhere. Some may hike, others stay

behind. We have found trails where we can drop some off and then go

to the end and go a short distance to meet them so we still get the

view. We play board games more. Our little one may not always

understand the game but he becomes the official roller of the dice

for everyone.

Plan a date for you to look forward to, be it a routine walk, a

class, meeting with friend etc and stick to it. Sign your youngest

and you up for gymboree or similar. Or make a special play date

where she picks from specified places--the library, park, lunch out

etc. Get that baby monitor out like someone suggested. It will do

both of you wonders. you will get more rest (it may take a bit) and

your daughter will gain independence. It will do your marriage and

rest of your family wonders too.

This disease can go into remission or it can be life long.

Irregardless you will be giving your chiildren copinjg techniques,

how not let something run their lives. JRA is part of your lives now

but isn't your life. If you have a clergy member or a counselor

perhaps go talk to them. They can be quite helpful too.

I hope you don't feel I am being too opiniated or bossy here. I have

lived in your footsteps and found ways that work for me. I decided

that I refuse to give into it (it meaning my lifes circumstances.) I

can't control the amounts of medicines, the pain, the circumstances

but I can control how I react and how much I am going to allow this

dang disease to take control. Believe me though, I still have those

days when it is too much. Generally then I realize it and realize I

have not been doing a good job of taking care of me so I am letting

things affect me more.

You're doing the right things. Just keep reaching out and venting

when it all overwhelms you. That is the wonderful thing about this

group. When you are having a down time there is someone to lift you

up and when you are doing better you can lift someone else up. Three

cheers for Georgina for making it all happen.

Best wishes for brighter days ahead.

e

[Guest guest]

kristine your so right

Robbin

[Guest guest]

Alesha

hi i am Robbin

stress and worry can consume you very quickly

i am the mom of 16

enjoy the rest times meaning the times no one has to go to a doctor

and everyone is well you might say

everyone goes through wavs of life

melissa was having problems years before she was diagnosed doctors couldnt tell me why and that was my biggest question whys

at the time i was caring for my mother in law and father in law both in their 80s

plus a son and husband a trip to the ER could mean a 3am up and rise and go

then another soon as i walked in the house from taking one lolol

then dropping son off at school after i cooked breakfast

as time went on we lost the in laws it was down to 3 well i thought it would be less stressed WRONG lolol my sons asthma worsened hubbys worsened

my hubby also was in the hospital for blood clots the next wav was hubby getting really sick he had to have gall bladder surgery went through that ok my mom got really sick and passed away 400 miles away everything slowed down for a few months then melissa couldnt walk finally something to go on with her

everything hit her like every 2 weeks from thinking she had lupus to dont know and finally she had JRA we take one day at a time after understanding this JRA better

it was a pain free birthday for melissa her 14th i get a call my dad passed away

i never once broke down never allowed things to beat me i am a fighter

life can swing you good times then swing bad times

we learn from each one

hug each one and tell them you love them theres no regrets in life if you do your best and the best you know but please relax and get your rest

even if its locking the bathroom door and relaxing in a hot bath

sitting on the couch reading to your child take time for yourself

and talk to us here in the group we have all experienced lifes ups and downs

email anytime

Robbin

[Guest guest]

Hi ,

Very well said. Thank you for sharing. I hope all is well for Skyler

these days? Especially after hearing about your latest insurance woes, I

really hope that the arthritis will remain well controlled. Perhaps this

will be a very good year, healthwise.

Take Care,

Georgina

wrote:

> Dear Alesha,

>

> First, I am amazed that you haven't lost your mind

> allready just having 8 children! You could give us

> all lessons.

>

> Seriously though, I think I can speak for most when I

> say that predicting the future is what we all want but

> can never have. Our children are our future and to

> see them in this manner gives us a sense of lost hope

> at times. Even greater is the heartache seeing them

> hurt.

>

> As hard as it is to learn and practice, this boils

> down to living just one day at a time, trying to

> maintain hope, doing what we can with what we have and

> our simply doing our best effort in all areas. This

> does not fix anything, but it may help us if we can

> avoid even a little worry. Worry can consume anyone

> yet it doesn't change anything to come except to make

> matters worse. This disease is impossible to predict

> and if we think about it, so is life in general. Worry

> adds to the stress and this is a great part of your

> loss of sleep, which in turn adds to the stress ~

> which becomes a vicious circle.

>

> Your baby sees the older child getting attention and

> could feel a sense of loss as her attention is

> possibly diminished, or just due to toddler jealousy.

> Perhaps the only thing to be done here are more hugs

> for everyone, but you are doing right by not rewarding

> her copycat behavior.

>

> In whatever way you can, whatever your belief, seek

> faith and reason for hope. I often read about new

> medical discoveries just to prove to myself that a

> cure can be just around the bend. Take time for

> yourself. If nothing else just go for walks & get out

> to watch a sunset. Remember that you are still alive

> and all your children love you deeply & need you, but

> teach them that life as they know it is changing and

> this can not be helped. Ask for their help in more

> things to take some of the load off of yourself.

>

> If there is anything I have gained from our life with

> JRA it is a deeper apreciation for life and the good

> times and a compassion for those with any affliction.

> You have a special calling as a parent of a child with

> special needs. Look for stories of children or adults

> who have overcome their challenges & know that with

> hope, prayer and perhaps a few miricles it could be

> your baby in a few years. Or, keep in mind that the

> disease could be under control in a short time by meds

> & therapy.

>

> One last thing, go ahead and loose your mind. I think

> we all have and few of us miss it anyway!

>

> Blessings & Comfort

>

> [ & Skyler, 6 Stills]

>

>

> --- alesha1003 <alesha1003@...> wrote:

>

>>I'm sure you have all been there but since my

>>daughter, 6,has

[Guest guest]

Thank You for all of you who are responding to this, it helps to read this.

I too was skinny to begin with and now I am 100 lbs, so everyone notices, and

notices how fatigued I am, and this doesn't help to have people who don't

understand tell you how awful you look, or why are you doing this, if you feel

so bad blah blah.

I am constantly hungry, and half the time, I don't have time to feed myself

because I have kids to take care of, and a house I am clearing out and

remodeling, not to mention I just kicked my now graduated 17 year old out of the

house because a stuff...she was just getting started on the diet, and now who

knows what she'll do, but I am done with her until she changes her attitude.

When I have had a cheat with a grain (mind you it is small), I end up with

diarreah, and do feel like crap, it's the one thing that gets me back on a

better attitude with the diet, but then a couple of days go by, and I just can't

deal with it. The one thing that does help, is the Electrolyte drink, but

still...ugh

le

[Guest guest]

Hi,

Thought I'd respond to your post. I have an 8 year old Aspie/ADHD daughter (diagnosed at age 6). Since your daughter was diagnosed early with ADD, I am curious to know if you've tried meds. At first, I was dead set against using medication, but things got so much worse I was desperate and it really did help my daughter with the ADHD issues. Almost 99% of Asperger's/ODD/PDD NOS kids have a corresponding ADD/ADHD diagnosis as well.

It also sounds like it can be chemical changes due to puberty, a lot of what you describe sounds like what my 16 year old NT daughter has been going through for the last couple of years (rages, forgetfulness, etc.).

My Aspie daughter has two older siblings who are very impatient with her and tease her alot, and make disparaging remarks. The stress of this family dynamic did eventually contribute to a divorce, which was even harder on the kids. If you are taking her to a counselor, don't stop, explore every behaviour modification option you can. Most importantly, find support for yourself and your spouse; knowing you are not alone can be very beneficial. Keep the communication going - talk to anyone and everyone in the autism community - there are amazing resources out there. Parenting these kids is a challenge every single day - and a friend of mine once told me and when the going gets tough it always comes to mind - that God chose you to be her mother.