NCC/Venting

[Guest guest]

Hey everyone!

Hope all of you are as pain free as possible & are feeling the best

you can! That's all we can hope for, I guess, is just get the most

out of every day we can. I've reached a point since I've developed

symptoms that it's difficult for me to get " the most " out of my days

anymore. I have not yet had surgery & the condition has also

progressed somewhat. That's why I'm contemplating surgery & have an

appt with Dr Oro coming up. Hopefully my insurance will see it the

same way I do & approve my visit to Dr Oro (fingers & toes crossed).

Just wanted to add my 2 cents after reading some recent posts about

surgery experiences.

I really wanted to vent about family & dealing with this disease. Do

some of you have the problem where your family thinks they know

what's best for you (but they really don't)? Their heart is really

in the right place but it just doesn't seem that way sometimes.

What makes my situation difficult is that my mom has failing health

too. It's been the worse for the past 3 - 4 years. Before I was

symptomatic of the Chiari 1 1/2 years ago, I helped her out a lot

with what she had difficulty doing around the house (cleaning,

laundry, etc) along with helping her with some of her medical needs &

transporting her around. It was " somewhat " difficult for me to do

these things for her while maintaining a full time career but I also

don't have a family or children of my own. I'm still pretty " fresh "

out of college & am interested more in my career vs a family right

now. I was glad to be able to do these things for her because I come

from a divorced family of which my parents divorced when I was in

early grade school. After their divorce, my father decided not to

have too much to do with me but my mom was the one who provided me

with the support & love my father chose not to do. So when she got

sick herself, it was hard, but I knew what the right thing was to

do. I thank my mom for instillng these morals in me.

Then 1 1/2 years ago comes this Chiari & my illness. I know I'm not

the only one this happens to. Now, it's difficult for me to be

the " superwoman " I was & unfortunately I have very little family to

rely on in town. I try to explain how burdened I feel with certain

things to my mom & it seems as if she doesn't understand. She is

doing extra things to the best of her ability but it doesn't cover

everything like laundry, etc. I've offered for us to investigate a

nurse or somebody coming in the home to help out but she refuses to

allow it. I could probably give up a portion of my full time job but

that would mean dropping down to part time work & taking on a new

function at work which I'm not ready to do. I worked too hard in

college to give it up without seeing it to the end. My next step is

to investigate surgery & see if that can improve the quality of my

life in any way. If that doesn't work, then I know I'm faced with

making another decision I don't want to. I know others have had to

do this but for me to make this decision, makes me feel like I'm

ripping a part of my heart out. I'm sure others have felt the same

way.

Part of what would make my life easier (for the time being anyway),

would be to have somebody possibly help out at home. How can I

convince my mom to think about this? I don't want to make a decision

behind her back. I want it to be a team decision. I think she's

fighting this so hard because allowing a person to come into the home

would be admitting defeat for her to her illness & mine. I'm not

trying to make her look like the " bad guy " in this. Sometimes we

make choices without realizing the reasons. I know it's been

difficult enough for her to deal with her illness & then her child

comes along with a medical condition too. Maybe I made a mistake

years ago by being too available for her? I just thought it was the

right thing to do.

Well, even if nobody has any advice to offer (I know this is a

toughie) it feels good to be able to vent to all of you. All of you

who know what it's like to live with this disease day in & day out.

Take care,

in OH