What To Do When You Don't Know What to Do?

General
21

Awwww Lori, not a crazy question at all. I so feel the same way. Very frustrating time in our lives. I mentally beat myself up often. Chiari is not an easy disorder to live with. My independence, my way of life the way it used to be is gone and I want it back. We are strong women with so much to give still. Lori, you give so much of yourself on this site. You help so many people by reaching out to others. You're not alone honey, you're never alone. You're not worthless or non productive. I know it feels that way sometimes because you just want to feel whole again. My friend, we're here, you're here, to tell the tale of Chiari. You're a powerful voice for us all and I appreciate every bit of advice and loving support you share with me and others. I hope I too can be as wonderful as you are always and that I too can help others with my heart and my story.

With love, Christine XO

22

Christine....

Thanks so much for your kind words.

You give of yourself to our site always...You have a heart the size of Texas...and trust me...your since caring and support helps us all here !!! Don't ever forget you are strong and valuable.

I am taking baby steps and trying to make positive changes in my life...one baby step at a time.

Thanks again for your reply and your caring and support!!!!

Love and Gods Peace,

Lori

23

lori, we have to learn to crawl before we can walk,

chiari isnt easy, its a hidden problem,

how did the party go? hope it didnt stress you to much, i dont do bday parties anymore as i find them hard, unless they are special age ones, i dont even like going to other kids parties, i can feel lost and that i dont belong,

i tend to stay t home, where im the happiest, and if anyone wants to see me, its now at my house, i jut find it hard, and by the end of the day im not coping and feeling like im a piece of crap,

you have to try to figure out what works for you, and other people have to work into that where they can,

joelene

24

Thanks Joelene!!

The party ended up going well..only 3 girls showed up...Julia asked 5,to come.

I too, am happiest when I am home...though get this one....We went to a new church yesterday and really liked it...there is a retreat this w/e and though it is last minute..I asked if I could come....The ladies I spoke with were thrilled i wanted to go and one gal is even setting up a ride for me since I do not drive long distances.

So...for me, that was a big step!

You said it right .."chiari isn't easy, it;s a hidden problem. I totally agree!!!

How are YOU doing/feeling????

Thanks for all your support and caring, Joelene.

Peace,

Lori

25

Lori,

I know we have talked about these issues before and you know I totally understand how you feel! I do have to admit that I am feeling better physically right now than I have in about 5 years. I do suffer from the depression, loneliness and not wanting to do anything or leave the house though. It doesn't seem to matter that I am taking two different antidepressants! I wonder how bad I would be if I didn't take those! I am here if you need to talk. Love you, girl.

Carla

26

Lori

My son just turned 15 and he is my life. He knows how bad things can get and he still is there no matter what. Last couple of days have been rough. Just wish something could go right for once. Hugs!

lori said:

Hi Monica....

I am glad you have a few friends who do check in on you..family...well..thats another story, right?? How old is your son?? You do need to be there for him....even though some days stink so badly you just want to crawl up and die...thats how I feel some days, anyway....hang in there....We got each other here on this site....I need to keeep that in mind myself when I am very down!!!

Hey Crystal.....I know that feeling all too well...being in a house full of people and still feeeling alone..that , i think is the worse...I am sorry to hear that about your dad.

You guys here are the best.....thank you for letting me tell it how it is for me , right now and not judging me...I feel judged by my family much of the time...can you all relate to that???

Peace,

Lori

27

lori im glad it went well,

omg you took abig step. but doesnt that feel good? it sounds very exciting, and hope you enjoy yourself,

im ok, kids started back at school, and im finding the drop offs and pickups really difficult. im alot more tired, and dont feel wonderful,

i saw the surgeon last week, he told me that the tumor hasnt grown, but my csf has slowed from the last mri,

he unsure if surgery will help me, but i told him to put me on the list and ill think about it, so i have time to cancel if i dont want it, and since the docs cant give me answers ive reached out to a medium, who ive worked with before, and hopfully i can get some insight of wether surgery will fix some of my issues, either way it will be interesting, i enjoy getting readings, there is also a spirital church here on suns, that i might look at going to, they do alot of healings and have special speakers come in, i use to go many yrs ago, but i grew up and was unsure about it all, but im at that time in my life, that i feel more pulled in the area,

i see the NL/ and sleep specialist next month, so theres might be hope there to,

i hope you are well, and please just do the best that you can, dont try to do what you cant, little steps,

love

joelene

28

Yeah Lori you're not alone--- its like you are reading my mind.

one thing i have found helpful for me is to grab a pen and a note book and write an old fashioned letter to WHOEVER (mine are usually to me though or to my mom whos passed) about anything you want to talk about! for me that is really helpful! sometimes i end up crying when i write (theraputic) esp the ones to mom- so i admit i do tend to write when i am alone. I have even written a letter to the medical community which sometimes i feel like photocopying and sending to every (aspect of the medical community-lol)

and i write Poetry! (that you seen) and i like to have lunch with a friend.

but when iam down the best and most theraputic thing for me is by far writing- and its a great outlet!

hugs to ya girl. look me up if ya need to!

and as redgreen says "we're all in this together ;D"

~Lisa

29

Hey Lori, I just wanted you to know how much this post related to me and actually was the post tht made me decide I wanted to join. I guess I felt tht everyone here would think I was crazy too n did not feel good about sharing my story. Your strength in writing this gave me strength, not only did it help me join but it has helped me know tht someone out there feels the way I do! After reading your replies, there are actually quite a few of us I c. My mother tries to support me but as soon as she heard the ns say a 4 mm isn’t even considered Chiari and could not be what is causing me pain, she went with tht. I try to explain I do not need any more tests! According to what I read on here everyone of my symptom is Chiari related, I truly believe nothing else is wrong with me and don’t want to go to a nl that’s just gonna rack up more bills I can’t pay! I do feel worthless and of no use to anyone, more of a pain than anything. Just know you are not alone and if you ever need someone tht understands, u can always rant to me, anytime! Hope ur day is going well for u!

30

Dear Diane...

Welcome..I am happy you joined.....We are all in this together...you are no longer alone!!!!

I look forward to getting to know you better.

Peace,

Lori

31

Hi Lori,

Please just know you aren't alone. It's a very complex illness, both physically & mentally. I have been surviving for 12 years and I am so tired. I try to find the simple pleasures in life. Just know a stranger in Va. feels your heartache and is right with you.

Tracy

32

diane

how are you? im sorry that your mother thinks like that, maybe in her way she can cope with it like that, everyone has there own way,

my mother isnt easy too. i dont spend much time with her because of it,

welcome to this board, i know you will find it rewarding.

joelene

33

Hi , hope you had fun on the retreat. Still fumbling around this site, i know its probably my meds ,
but i feel like im the only one that doesnt get how to use it. When the members online box shows up
At the bottom of the screen , does that mean that they are on the forum page or just on their
Computers.? Please dont laugh, the variables on this forum are making me question my intelligence.
I read someones site that asked about chiari affecting their spelling, speech, etc.
Oh yea, these are all little gifts left by the chiari fairy. I hope that anyone who has a doc tell them that
Thought processing,stuttering & basically not feeling brilliant anymore; are not due to the chiari,
“Can go butt a stump”.( Sorry that was my southern girl coming out.)
i appreciate any suggestion on manuvering my way around this forum.
Thanks for the help
Renee

34

Lori,

I know exactly how you feel. Since my first surgery my health has not been so good. Doctors still won’t le me go back to work, which leaves me feeling worthless. I’m a single mother and I have had to give up my apartment due to lack of finances. Thank the Lord my best friend had spare rooms and asked us to stay with her and her family. It gets lonely when everyone is gone all day. But I have made it my goal to find at least one positive a day!

You are not alone and we are here for you!
<3 Heather