NCC: Family, Adjustment and Losing Control

August 3, 2012

Hi Everyone,

It's been awhile since I've posted at least I think. I had my gastric emptying

study which came back severely abnormal. I was sent to a Gastroenterologist who

thinks the test was done wrong. . . I think I posted this; my memory is really

going downhill fast so sorry if some of this is repetitive.

So, Aug 6th, I will have an endoscopy and colonoscopy because as he states I

should be throwing up not just on a liquid diet if the emptying was that bad. .

.. I do use Zofran quite frequently during the day. With some polyps in the

family, I'm really not opposed to the tests and maybe it will find the

right-sided pain I've had since my gallbladder surgery.

Just reminder for anyone new - I have Chiari (decompressed 2001), Detethered

(2006), EDS (2011), Osteoporosis (2011), Sleep Apnea (2009) Depression (200. . .

) who knows it's been too long to remember, IBS (1981 - when it was spastic

colon). Had endometriosis but all parts removed kicked in the Chiari. . . think

endo might have been an easier to deal with even after 2 kids. Idk.

In the middle of this, my last Gpa passed away. He was 97. It's hard to be sad

that after living 97 years of a wonderful life he just fell ill and passed

within 3 weeks. But, there is something to be said for losing your last

grandparent too. It's strange. I did fly down for the ry and Funeral.

It's important to bury our family. It was in Broken Arrow/Tulsa area - 110

degrees or so.

I'm struggling with adjusting to my body not cooperating with my (digestive

system, EDS - joints and muscles) and my family feels as though they have to be

my parents or guard dogs or something. . . I haven't had these problems in the

past.

Maybe it's my girls getting older. They were 10 and 12 when it all started.

Now they are 22 and almost 25 with a grandson as well. They seem to be so

controlling and I feel as though I'm losing control of my life.

Any ideas?

Thanks,

Wyoming

August 4, 2012

I'm sorry to hear you are dealing with so much right now. The stress definitely

plays a role with stomach motility (making it worse). I'm in that same boat -

even with my new meds to help the motility, it still can take a whole day for my

stomach to move and when I'm stressed I can't eat at all.

As for your independance, all you can really do is talk to them. I just had to

have " the conversation " with my husband again yesterday when he tried banning me

from driving to a mall a half hour away via the interstate. I reminded him that

while I appreciate the times he has had to drive me because of how I may have

been feeling that particular day that I would never drive if I felt it was

unsafe ( especially with other passengers in the car). He can't just take all my

independance away from me. I need those times of " normal " for my sanity. He

needs these gentle reminders from time to time with different situations. I

think having to ask for help and depend on others has been the hardest part of

all of this.

Debbie R

Sent from my iPhone

August 5, 2012

, you're grieving. Completely understandable.

You know that your life, any life, every life - even the long life of a healthy

person - changes and ends, despite valiant efforts to sustain a desirable

status. No one has control.

I remember talking with you several years ago. You approached your health

challenges intelligently and courageously, and I think you still do. You've been

battling nonstop for more than a decade. Of course it's tiring, and it

sometimes feels futile. Grief is appropriate.

As for your now-adult daughters' apparently controlling behavior, could it be

that they are trying to solve the problems that they have witnessed for half of

their lives? Perhaps it is their way of loving you that they try so hard not to

lose you.

Let them. That puts the power of choice back in your hands.

Hugs,

Sandy

August 7, 2012

Hi Sandy,

Yes, we have talked in the past and I guess I haven't thought of grieving. I

don't know why. It feels like grieving.

And yes, my grown daughters have had the experience of going through it with me.

I think too. . now just as of yesterday it was confirmed, I have another

diagnosis with " no " cure and very little treatment called Gastroparesis.

Although, the treatment is mainly diet which IS in my control. So, I should

feel good about that but I am going through being angry right now. Angry that I

have another disease that has NO cure, VERY little treatment and the drugs they

DO have for it; the doctor is reluctant to give me due to the " other " drugs I'm

on. Reglan is " black labeled " by FDA because it could cause neurological

problems or something like that.

Anyway, I have a followup with him of course. And, Sandy yes, you may be right.

I'm definitely going to have to have a discussion though with my family because

they don't know I'm feeling like this and as much help as they give me they

deserve that!

Thanks,

>

> , you're grieving. Completely understandable.

>

> You know that your life, any life, every life - even the long life of a

healthy person - changes and ends, despite valiant efforts to sustain a

desirable status. No one has control.

>

> I remember talking with you several years ago. You approached your health

challenges intelligently and courageously, and I think you still do. You've been

battling nonstop for more than a decade. Of course it's tiring, and it

sometimes feels futile. Grief is appropriate.

>

> As for your now-adult daughters' apparently controlling behavior, could it be

that they are trying to solve the problems that they have witnessed for half of

their lives? Perhaps it is their way of loving you that they try so hard not to

lose you.

>

> Let them. That puts the power of choice back in your hands.

>

> Hugs,

> Sandy

>

August 8, 2012

Hi Debbie,

It's nice to have this group because at least you all know what I'm talking

about!

Oh, stress has a huge amount I think. When I was 14, I developed IBS and that's

all stress related as far as I know. I know when I travel (very stressful) it

acts up and I hate it!

Yesterday, I had an EGD and colonoscopy and found out I have Gastroparesis.. .

basically, the doctor told my husband that my stomach muscles are paralyzed more

or less and there is NO cure/ very few drugs and basically it's hopefully

controlled by diet. Great, another disease that you can't cure, little

treatment but one good thing. . . I am in control of my diet! But, it's a very

controlled diet. I don't know why I have it.

As I said when I replied to Sandy, it's true. I need to talk to my family. Let

them know when I can and can't do something. We know our bodies best and know

when we feel good versus bad. It's so frustrating but I really can't blame them

(my girls). . . they have grown up with this!

They don't remember me when I could do stuff before Chiari struck me so hard.

Thanks for the reply and hope everyone is having as good a painfree day as

possible!

>

> I'm sorry to hear you are dealing with so much right now. The stress

definitely plays a role with stomach motility (making it worse). I'm in that

same boat - even with my new meds to help the motility, it still can take a

whole day for my stomach to move and when I'm stressed I can't eat at all.

>

> As for your independance, all you can really do is talk to them. I just had to